Just got devastating news - UPDATE

[MANative]

Last edited Sat Oct 6, 2012, 08:25 PM - Edit history (1)

My dear friend and business partner was diagnosed with a liver disease that will take her life in two to three months if she does not have a transplant. She is a 55 year-old single mother of a ten-year-old daughter, and has no health insurance. Her doctor told her that without health insurance, no hospital will allow her to be treated. He told her to go home and get her affairs in order. I'm gutted over this. I've known this wonderful woman for nearly 15 years, and she is smart and kind and as beautiful inside as she is outside. She doesn't deserve this.

UPDATE: "T" and I have been wading through all of your wonderful ideas and suggestions throughout the day, making phone calls, faxing things all over the place, and we have at least three solid things in process thanks to my DU friends. We are actively working on the Obamacare piece, SSI/SSDI, and the Mayo Clinic. She has also scheduled an appointment with another doctor on Tuesday for a second opinion. She was overwhelmed at the level of caring and helpfulness from this community. I told her, of course, that this is what's at the heart of being a Democrat! She and I are both very hopeful that she will now be able to get the care that she needs. She gratefully accepts your warm wishes and hugs, and sends them back with gusto. I'll add mine to that sentiment.

[JaneQPublic]

1. Hugs to you and your friend. (nt)

[lpbk2713]

2. My thoughts are with her and her daughter.

This is devastating news for all concerned.

[global1]

3. Wouldn't It Be Nice If One Of These Big Money Donors - To Either Party - Would ......

divert some of their political donation money to pay for this woman's transplant? My god they can give $50,000 at a shot for a chance to meet and take a picture with a candidate - wouldn't you think that they would get more gratification out of helping someone like this woman?

[theKed]

8. And that,

in part, is why America doesn't have single-payer universal healthcare. Those with the giant stacks of money - and the political power associated with it - would rather spend $50k to shake someone's hand than save another human being's life.

[MANative]

10. What makes this horrible beyond the pale is...

that her ex-husband is a VERY wealthy venture capitalist, nearly in Romney's league, and he won't help. All he gives her is $2000/month in child support, a low figure for his ability to pay because he, too, hides all his money overseas. That amount, however, is enough to disqualify her from receiving Medicaid. The anger I feel toward him is indescribable.

[dkf]

63. Wow he won't help the mother of his kids?

That shows how much he cares for them too.

[Ken Burch]

160. He probably thinks she deserves it for divorcing his ass.

This bastard needs to be called out publicly, by name.

[LonePirate]

80. The sadistic ex-hubby is essentially executing his daughter's mother. He is a horrible father.

He is a vile piece of scum. He needs to put his daughter's needs above his pettiness for once in his life.

These 1%ers and their ilk sicken and disgust me more and more with each passing day. There is no hell bad enough for scum like him.

[MrMickeysMom]

95. Jesus Christ Almighty... Are you able to print out this thread or send otherwise?

He needs to see what perfect strangers think about this...

Were I to address him with anything, it would be the response to your OP... the entire thread.

What a fucking dick. Does he not realize that his daughter will NEVER, EVER, EVER be able to forgive this act? She lives with her mother, and the father would deny this? Really?

I would say to him... "Look at it this way, dick head, whoever you are... Instead of paying $2,000 in monthly payments, you'd actually HAVE the responsibility of dealing with your daughter, were you to let her mother die. Obviously it's just a monthly expense, but it won't be afterwards. She, who is NEVER going to be able to deal with this, would be robbed by YOU.

GOD FUCKING DAMN YOU!" Jesus, this pisses me off. It's never enough for these people...

[Ken Burch]

161. This is why we need real-life versions of the "Leverage" team.

n/t.

[calikid]

172. Amen to that, just found that show, it's GREAT n/t

[MrMickeysMom]

189. Don't know the show, personally...

[ashling]

96. That is morally equivalent to murder

[Auntie Bush]

138. Typical ReTHUG A-Hole

Stingy, cheap as hell and mean... if darn right evil!

[Arugula Latte]

144. I can't imagine doing that to your own child.

No matter how much you hate your ex, to deny your child's other parent a chance at life is unimaginable. I'm picturing him at his daughter's wedding ... "Sorry your mom couldn't be here today, or any day, but I had to hide my money in the Caymans."

[Ken Burch]

159. Go public with her husband's name...go to the media with it...SHAME the bastard into decency.

If he's willing to let the mother of his child die to save what would be to him a trivially small amount of money...it's worth it.

If nothing else, it might make him fork over the funds and save her life.

The scumbag deserves whatever you do here.

[James48]

41. We need a 50% "political spending tax"

for all reportable FEC filed spending, at least 50% should be taxed for health care for those who don't have it.

Just think how much health care could be provided if every $300,000 30 second political TV commerical were taxed $150,000 of health care tax at the same time.

(or split it half and half - 25% for a health care tax and 25% tax to pay for the opposing candidate. that way EVERY candidate would get SOMETHING for defending themselves against billionair spending on ads).

[Tumbulu]

104. Excellent idea!!!!!!!nt

[Auntie Bush]

139. I second that. I also think it's doable. nt

[hamsterjill]

50. Honestly!

That's what they should be doing, especially those that are in church on Sunday mornings!

[nadinbrzezinski]

4. All I can offer you is a hug

[CaliforniaPeggy]

5. I am so sorry to hear this awful news.

My best to all of you...

She will remain in my thoughts...

[JRLeft]

6. I am sorry to hear that.

Best wishes to you and your friend. Hopefully she will get a transplant in the very near future.

[mzmolly]

7. I'm so very sorry. What state is she in?

There may be programs that her doctor wasn't aware of.

Thoughts and prayers are with you and your friend.

[MANative]

14. She's in Florida. We're trying to find her some help through...

The American Liver Foundation, and not-for-profit hospitals, but nothing has come through so far. Still early in that investigation, though, as we've only known definitively since this morning. A few weeks ago, her doctor hinted at the need to consider a transplant, so she started doing some research then. When she saw him today, he told her that the situation had become critical, and she only had a couple of months.

[Spitfire of ATJ]

37. Have you checked here?

http://www.doctorswithoutborders.org/

333 7th Avenue, New York, NY 10001-5004. Phone: [phone]

They might provide a lead if nothing else.

[MANative]

39. Thanks for the idea - hadn't thought of them, believing them to work outside the US. n/t

[Spitfire of ATJ]

59. You could try here too....

http://www.cartercenter.org/about/contact.html

Mailing Address:
The Carter Center
One Copenhill
453 Freedom Parkway
Atlanta, GA 30307

Phone:
[phone] or [phone]

E-mail:
[e-mail]

Like I said. They could provide you with a lead if nothing else.

[MANative]

66. Oh, thank you! And this gave me another idea - my sister works for Emory Medical and...

she may have other ideas. Can't believe that I didn't think of that first!

[Spitfire of ATJ]

70. Isn't it amazing how we are a lot less alone than we think?

I suspect it's the whole "pull yourself up by your own bootstraps" mindset filtering down whether you want it or not.

[mzmolly]

79. How very sad.

You may have seen this already? But, JIC I'm posting it here.

http://www.liverfoundation.org/downloads/alf_download_892.pdf

American Organ Transplant Association

The American Organ Transplant Association (AOTA) provides fundraising information for patients needing transplants and aftercare; assists with transportation to and from the transplant center for evaluation, surgery and aftercare; provides transplantation resources; provides access to pharmacy saving programs for patients who need medicines for their transplants; and promotes organ, marrow and tissue donation.
Program

AOTA's Medication Assistance Program offers support to individuals in need who do not have insurance, have limited pharmacy benefits, have a cap on their plan, or whose medications are excluded. For more information visit:

http://aotaonline.org/medicationassistance.aspx.

AOTA’s transportation assistance program assists with patients’ transportation to the transplant center. For more information visit: http://aotaonline.org/transportationassistance.aspx. Eligibility
Transplant patients are eligible for AOTA’s programs. Contact AOTA for more information on eligibility requirements. Contact Information

American Organ Transplant Association 21175 Tomball Parkway #194 Houston, TX 77070 Phone: [phone] Website: http://www.aotaonline.org

I only wish Obamacare were in effect, NOW.

[area51]

166. I only wish SINGLE PAYER were in effect NOW.

link

"Employer-based health insurance has always been a bad idea. Your life should not depend on who you work for." -- T. McKeon

[font face="times"]"Any proposal that sticks with our current dependence on for-profit private insurers ... will not be sustainable. And the new law will not get us to universal coverage ...." -- T.R. Reid, The Healing of America[/font]

"Despite the present hyperbole by its supporters, this latest effort will end up as just another failed reform effort littering the landscape of the last century." --John Geyman, M.D., Hijacked! The Road to Single Payer in the Aftermath of Stolen Health Care Reform[br]

[mzmolly]

188. I only wish OBAMACARE were in effect NOW.

Last edited Sat Oct 6, 2012, 04:42 PM - Edit history (1)

We could still be fighting for single payer, or get help for people with our existing system. A system, much like the one utilized in the highly rated Netherlands.

[K Gardner]

9. jeebus h christ, so sorry...

[skeewee08]

11. Sorry to hear this, I will keep your friend & her daughter in prayer

[Whovian]

12. God, I'm so sorry. Try fundraising?

If medicine in this country wasn't so profit oriented she might stand a chance. America is killing its citizens in the name of profit.

[PufPuf23]

13. The lack of social morality in our nation is appalling. So sorry. nt

[Swede Atlanta]

15. My thoughts and prayers are with you and your friend....

This is just another example of how we have misplaced priorities in our health care delivery system. Here is a relatively young mother (she is my age) who is now sentenced to death by our existing system.

By no means do I want to suggest we don't care for our seniors under Medicare but at some point our society is going to have to make some tough decisions.

Do we provide hope to this youngish mother of 55 or do we pay for triple bypass surgery for an 85-year old senior?

I wish we could provide care for both but we can't put off these moral decisions.

For now your life is decided by whether you have insurance or not and secondly by what the bean counters at the insurance company decides.

We talk about us being a "moral" country. This situation is just an example of why I question that assertion.

[MANative]

35. I'm hoping that because she is so young, it will work in her favor in getting help. n/t

[crunch60]

71. This should not be a decision about either young or old receiving

treatment, this should be about providing affordable health care for all people, like other civilized countries provide to their citizens.
Romney/Ryan in the white house will certainly make this situation much worse.

[MANative]

75. Sadly, what "should be" and what "is" are two different things in this country lately.

And you're so right that it would only be much worse if the Repugs took control.

[Jennicut]

16. That is very sad.

The fact that RWers in this country block any attempt to improve people's ability to get health insurance in this country makes me sick. How would charity help this woman? Charity to rely on whether you live or die. And she still would not have insurance.

I too had a bad week as someone close to me died. All I can offer you is to stick close by your loved ones, they get you through the worst of times. And to look at what programs her state may offer to help.

[MANative]

21. That's what we're trying to investigate now. Hoping that we can find a program that will help. n/t

[renate]

112. I'm sorry for your loss

It's very kind of you to reach out to someone else in need, at such a hard time for you.

[Jennicut]

120. Thanks.

I was crying today talking to my Mom about it...my cousin died at 24. He took his own life. The funeral is tomorrow, my parents went to the wake today in New York. I still can barely believe it. So surreal.

[renate]

167. oh, no... that's terrible

So young. I'm sorry, for you, for him and the pain he was in, for your whole family.

[Horse with no Name]

195. Not to mention the unthinkable

that a person in this situation leaving children behind would be paying for those children to be in foster care as well as their medical care.

The shortsightedness of these arbitrary idiotic decisions sicken me.

[barbtries]

17. what about the ACA?

might there be help for her? get ahold of a social worker before you succumb. work now. fall apart if nothing works out.

oh, and please know you have my sympathy and i wish all the best for your friend. i'm just thinking there may be a way.

[MANative]

44. From what we understand, the provisions that would have helped her don't take effect

until 2014. Checking into it, though, to be certain.

[barbtries]

58. all the best

to her, her daughter and you in your efforts to get her some help.
we are falling short of being a civilization when some live and some die and that hinges on how materially rich you are.
do you know the ex? any chance of getting him to fund it (so his young daughter can keep on having her mother!)?

[MANative]

60. Working on that angle, but not hopeful. He tends to help only with...

very little, material things, but I'm hoping he'll have an attack of conscience before it's too late. He's not a nice person.

[a2liberal]

109. I thought there were supposed to be catastrophic pools NOW

before the exchanges kick in on 2014. I don't really know for sure, just something to look into

[Ms. Toad]

132. There are.

https://www.pcip.gov/

[karynnj]

135. That might be how she can get insurance IF her ex will pay for it

That this exists and is a pool that has to accept people is cheaper than him paying the unlimited costs for an uninsured person. I hope the OP will investigate this avenue and push the ex to pay for it. If the ACA high risk program works and the ex won't pay, maybe going to the local media and setting up a fund to help. I can't believe that there would not be sympathy for a 10 year old and her mother.

[Patiod]

176. Her ex clearly wants her gone - it's win/win for him

no more child support, no more custody battles

[girl gone mad]

173. This was a political decision.

Now we see how it is costing real lives.

[Liberal_in_LA]

18. That is some seriously bad news. Perhaps you could get an article in a news paper, get donations?

[Iwillnevergiveup]

148. That's exactly what I was thinking

A human interest story could raise some badly needed up-front cash. You are a very good, loyal friend. I was asking myself what I would do in your situation, and guess I would get a mindset into my own head that the transplant would go forward and convey that message over and over to your friend. With all the leads and suggestions here, I believe in her case, it will happen.

One question: is this wonderful daddy prepared to take custody of his daughter if his ex-wife dies?

Please let us know how you're progressing.

[cilla4progress]

19. So sorry!

Cancer is like one of those shooting galleries at the county fair. It is completely random, who it strikes. Hugs.

[Egalitarian Thug]

20. I'm so sorry. Are you in a position to verify or challenge that diagnosis and possible treatments?

The reason I ask is that I was given similar news about someone I care about a few years ago and I don't take no for an answer. I sought out some much better doctors and she is alive and healthy today with a long-term future ahead of her.

It may be true, and if so you have our sincerest sympathies, but if you are in a position to do so, find out who is the best, get to them and verify.

You said she has no health insurance and our for-profit health careless system routinely writes off people like that, so just make damn sure that there is indeed no hope before accepting what they've told you.

[MANative]

27. Exactly what I told her this morning.

The doctor she's been seeing is very definitive in his opinion, but I encouraged her to get a second opinion primarily because the hospital he's connected to is private/for-profit. Way too soon to give up, in my opinion.

[beachgirl2365]

22. Thoughts and prayers with you and your friend

Suddenly my day's disappointments seem soooooooooooo trivial.............My husband lost his Mom to liver disease a yr. ago...... plsI am so sorry for you and your friend and her daughter...............

[southernyankeebelle]

23. I sit here crying knowning a little girl is going to lose her mother and there isn't anything

she can do. Life is not fair is it. I wish I could say it's going to get better but we know it's not. Does she have anyone who she can trust in taking care of her daughter. I know what it was like to lose a parent young. My dad died leaving a 4 yr old and a 10 yr old. Life is forever changed. My dad died unexpectedly. She has some time to get things in order. My heart goes out to your friend. Make sure the child gets counselling. It really is imperative. My little brother never did and it effectived him til he died at the age of 40. He died of lung cancer and never smoked a day in his life. Thank god he had no children. None the less he died about 5 yrs ago and I still miss him every single day. I am sure just be there to help her in anyway you can. That is what a good friend should do. I am sure you are. God bless your friend and may she not suffer so much pain.

[MANative]

40. I am just aching for her little girl. A complication is that the dad is quite a lot older...

than my friend - by at least ten years, and I'm pretty sure he's 67. That makes things dicier on numerous levels, not the least of which is that he's a royal prick, and I would hate for this angel to be raised solely by him.

[southernyankeebelle]

99. Well am 65 and I know I take care of my 6 yr old granddaughter at times. They live next

door to me and my husband. I ususally see her everyday along with her half brother. We are close and both are close to my husband. We both have health issues but honestly I think we are in the best financial situation to take care of the kids if something happens to their parents. My husband is 7 yrs younger then me. We work well together. Each of us are better with the kids at something. We take turns. We love them to death. Although my granddaughter is only 6 am trying to teach her to cook dishes my mother taught me. Her mother really isn't big on cooking. I do have A Fib heart condition. But I went to the doctor and am good til next yr. All I ask god every day before I put my head on the pillow is to help me make it til my granddaughter graduates from high school and she can remember me. Oh by the way try and take lots of pictures of them together. Make her a scrapbook. Really her daddy might have an attitude adjustment because he will have to. Make sure people are watching out for her. Maybe she and her husband can pick someone to take her in case something happens to daddy also. You never know.

[Frustratedlady]

181. Then the daughter should be getting SS benefits if he's 67...

Is he pocketing it?

My heart goes out to you all. I hope her doctor doesn't know what he's talking about and she is able to get treatment and live many years in the future.

[99Forever]

24. There are times I am ashamed to be an...

... American, this is one of them. That our "healthcare system" can be so callous to our citizens is devastating to hear. And worse yet, is knowing that this is the norm, not the exception. Everyday, probably thousands of times over, good people like your partner/best friend, are treated the same way. It's just plain inhuman, immoral and heartbreaking.


"Greatest nation on the Earth," my a**.

Our thoughts go out to your friend and you.

[sinkingfeeling]

25. Don't cry, get busy. Go online and search her disease and find either

an organization that will pay the bills or medical trials.

[MANative]

31. Working on that, for certain. n/t

[busterbrown]

26. You would think her M.D. would make it is own personal battle to begin a fight to do something......

N/T

[itsrobert]

91. Don't they take an oath or something?

hmmmm

[jsr]

122. Their oath is to not cause harm

as in actively killing you. Letting nature take its course is a different matter.

[Doctor Jack]

123. The problem is that most doctors have too many patients

That is why most MD's are in and out of the room in 2 minutes. Odds are the doctor in this case probably has another 20 patients in the same situation and there isn't enough time in the day to advocate for all of them. Plus their sanity would deteriorate quickly if they got caught up in the lives of every patient they had. Personally I would blame the hospitals in situations like this, as well as society in general for refusing to introduce universal health care for the past 100 years. You make health care a business with bottom lines and this is what you get.

[MANative]

124. I'm sure you're probably right. I do know that he has...

been treating her to this point for the equivalent of a typical co-pay, so I'll cut him some slack on that. You are soooo right about the huge mistake and moral fallacy of the healthcare-as-business-for-profit model. I've believed for many, many years that single-payer universal healthcare was the only solution, and we're in a better place now than we were four years ago by virtue of having Obamacare, but it just doesn't go far enough in the quest to maintain human health and dignity. It still appalls me that we are just about the only industrial nation that doesn't have universal healthcare.

[Ms. Toad]

131. There is a much bigger issue with transplants

Transplants cost around $500,000, and annual medication costs every year after that cost around $100,000 so your body doesn't reject the organ.

On top of that, there is a severe shortage of organs (all you within reading distance - sign those donor cards). There are far more people who need organs than there are organs available, so they have to make the most responsible decision they can with the precious gift of life.

Simplifying it, there is a two step process - qualifying and waiting until you are most needy.

To qualify you have to establish that you have the means (directly or through insurance/medicare/medicaid) to pay the medical bills now (and in the future), are to be able to care for the organ long term (following a strict drug regimen, have a social support system during the immediate post transplant period - and during future rejection episodes - or the need for a second organ), and you have to be sick enough that living with someone else's organ is better for you than living with your own. This qualifying process (medical, social, and financial) ensures that anyone who rises to the top of the list has a reasonable chance of using the gift of life well.

Getting through that process isn't something a single doctor can make happen - it isn't like advocating for a medical exception for medical care denied by an insurance company (which - as far as I am concerned is their responsible). The decision is made by a team of specialists, following strict guidelines to ensure the process filters out people who have no chance of making the organ last.

As to the first step, I would encourage the friend to get in touch with a transplant team and let them start the evaluation. Gastroneterologists (and even hepatologists) don't necessarily know the ins and outs of getting listed - and the comment made actually sounds more like something a GP would say than a specialist.

Just to close the loop on the second step - there is a constant re-evaluation of medical need once you are listed. If you get better you move down the list (or even off). If you get worse you move up. Where you are on the list when a liver becomes available determines whether you get the call.

[SamKnause]

28. Devastating news.

There are no words for such an injustice.

Alan Grayson was 100 percent correct about the health care system in this country.

I wish he had been wrong.

Health care should be a right, not a privilege.

I hope some medical facility reads this and steps up to the plate.

Have you posted this on multiple sites ?

Has she plead her case to the news media ?

I hope something can be done.

This is just wrong.

My sister died from breast cancer even though she had the best medical care money could buy.

[LovingA2andMI]

74. That is because the cure would take away PROFITS from~~

The Prescription drug industry who gets the opportunity to charge top dollar prices to pump individuals with poison/Chemotherapy or fry them beyond repair/Radiation

That's the way the American system works. So called "best system in the World" that refuse to find a CURE for cancer.

RIP-Mom and Dad, who both died of Cancer...

[SamKnause]

162. Cure

I am aware.

Condolences.

[Patiod]

178. not really.

First, sorry about your parents. I lost my dad this month, so I know where you're coming from.

Second, I earn my money from Big Pharma, and have worked with top management at a whole lot off different companies, and they NOT sitting on cure for all the many cancers out there. Think of it this way: people in "Big Oil" could sit on alternate energy, and no one they know would be affected, because they can afford expensive gas, and they won't be around by the time climate change starts ruining lives.

But people in Big Pharma have kids, spouses and parents that are impacted by cancer - many have cancer themselves. Believe me, if the were "refusing" to find a cure, Big Pharma folks with cancer or with cancer in their families would be screaming to high heaven. You can't buy your way out of cancer the way you can buy your way out of expensive oil. They aren't refusing to find a cure - they desperately want to cure themselves and their kids, spouses and parents every bit as much as we do.

A disproportionate percentage of people who work for companies like Endo (which makes diabetic treatments) and Becton Dickenson (which makes diabetic supplies) are diabetics themselves. These are not people who would refuse to find a cure for diabetes. It's the same way in cancer treatment - lots of people go into cancer research because they lost a loved one to cancer.

The real problem is that we're probably going to have to look in new directions for cures, and we need to look to some of the causes - in the case of liver cancer, treating and eliminating hepatitis to lower rates of liver cancer - to even start lowering mortality from the end cancer.

And here is where you're partially right - the "system" - the funding - tends to be skewed to pharmaceutical treatments, when we need to spend more time and money looking at gene therapy, surgical/invasive treatments, and other therapies that aren't delivered by pill, injection or infusion.

But I think it's more a case of "that's how we've always done it" and it needs to be shaken-up, the way Lee Ioccoca is shaking up diabetic research.

[Mad_Dem_X]

30. How terrible.

My thoughts and prayers are with your friend and her daughter.

[Dont call me Shirley]

32. Bless your friend, her daughter and herself. She must get on medicaid somehow.

I send her, her daughter and yourself my energy of healing and comfort. I almost died from lupus because I had no insurance. My son understands what the daughter soon will be going through. It has wrecked his life; make sure she has a strong, caring support system; make sure you all do.

[LeftofObama]

33. I'm so sorry!

I agree with the others who said to start getting the word out. Who knows, maybe somebody somewhere will hear about it and help. It's times like these that I wish I was in a position to do more.

[MannyGoldstein]

34. Awful, awful

My heart goes out to all.

Could she move to a sane state immediately and get care there? Like here in MA?

Manny

[MANative]

36. One of the ironies is that she moved to FL less than two months ago, from CT...

because the cost of living was so much lower in FL. I think she'd have a better chance at getting help here, but figuring out how to move her back north in the current circumstances is daunting.

[MannyGoldstein]

52. I just took a look at Mass. Commonwealth Care

I don't know if this is at all helpful, but here's some info:

Only took a quick look, but I don't see anything about needing proof of residency - only a checkbox that you are a resident and will remain one.

Some links: https://service.hhs.state.ma.us/ierhome/LandingPage.do?method=displayConsumerHomePage&pageSwitch=HOME

http://www.mass.gov/eohhs/docs/masshealth/appforms/mbr.pdf

https://www.mahealthconnector.org/portal/site/connector/template.MAXIMIZE/menuitem.3ef8fb03b7fa1ae4a7ca7738e6468a0c/?javax.portlet.tpst=2fdfb140904d489c8781176033468a0c_ws_MX&javax.portlet.prp_2fdfb140904d489c8781176033468a0c_viewID=content&javax.portlet.prp_2fdfb140904d489c8781176033468a0c_docName=content&javax.portlet.prp_2fdfb140904d489c8781176033468a0c_folderPath=/About%20Us/Connector%20Programs/Eligibility/&javax.portlet.begCacheTok=com.vignette.cachetoken&javax.portlet.endCacheTok=com.vignette.cachetoken



https://www.mahealthconnector.org/portal/site/connector/template.MAXIMIZE/menuitem.3ef8fb03b7fa1ae4a7ca7738e6468a0c/?javax.portlet.tpst=2fdfb140904d489c8781176033468a0c_ws_MX&javax.portlet.prp_2fdfb140904d489c8781176033468a0c_viewID=content&javax.portlet.prp_2fdfb140904d489c8781176033468a0c_docName=CommCareOverview&javax.portlet.prp_2fdfb140904d489c8781176033468a0c_folderPath=/About%20Us/CommonwealthCare/&javax.portlet.begCacheTok=com.vignette.cachetoken&javax.portlet.endCacheTok=com.vignette.cachetoken

[MANative]

57. Wow - thank you for this. I'll do some digging into what's here.

[MannyGoldstein]

64. Very complicated thing to look into, probably

But since we probably have the closest thing in the US to a reasonable and compassionate health care system, there might be a way.

Can I infer from your handle that you're a Mass native?

[MANative]

67. Yes, I grew up in the Greater New Bedford area, and still have most of my family there.

You're right that healthcare in MA is probably the best in the country.

[tpsbmam]

88. If it helps and this is a consideration, I live in NC and my insurance is Inclusive Health.....

the federal program NC adopted -- it's the NC high risk insurance partnered with the federal plan that came about due to the ACA.

I was uninsured for many years and, with multiple preexisting conditions, ineligible for insurance. The NC state plan was unaffordable for me and I'd have had to wait a LONG time with a preexisting condition....whatever, not the point now. With the adoption of the federal plan, I was finally eligible and could (barely) afford it. It came just in time for me -- docs discovered a large ovarian tumor with accompanying tests that looked, in toto, like raging ovarian cancer.

I applied for and almost instantly got Inclusive Health, which after the $4500 deductible, covered 100% of everything. (I got lucky -- it was a borderline malignant tumor -- once it was gone, I needed no further treatment).



Here is some basic info:

http://www.inclusivehealth.org/fed_eligible_reg.htm

Eligibility Requirements for Federal Option Coverage

You are eligible of Inclusive Health - Federal Option Coverage if you have been without creditable coverage for at least six months and...

You can answer YES to AT LEAST ONE of the following questions:

Your medical condition makes you "uninsurable."
You have been refused or denied coverage for health reasons.
You have been offered coverage by an insurer with a conditional rider limiting coverage.
You have one of the Inclusive Health - Federal Option presumptive conditions which allows automatic enrollment.

You are eligible if you can answer YES to ALL of the following questions:
You are a legal U.S. resident.
You are a North Carolina resident.
You are not covered as a dependent.

Presumptive Conditions:
You are automatically eligible for Inclusive Health - Federal Option coverage and
you have been diagnosed with any of the following conditions:

"Major Organ Transplant" is on that presumptive conditions list.


Since you've posed the idea, just throwing one more in there.

Link to the Inclusive Health home page: http://www.inclusivehealth.org/index.htm

My heart goes out to your friend and her daughter. I hope all of the ideas out there will find a solution.

[BobbyBoring]

38. I feel your pain

I just lost a dear friend to liver disease. She was 61. I have to add, it's a horrible way to die. There are alternatives to western medicine. I would suggest checking them out. Our docs Poo poo Eastern meds, but they work and are cheap. Check out TCM. There are probably quite a few practitioners in FL.

[Patiod]

179. But don't let your friend waste time trying alternatives INSTEAD of western medicine

That's exactly what Steve Jobs did.

[LoisB]

42. Devastating.

Really sorry to hear this. PLEASE have her get a second opinion and I truly, truly hope she can find help.

[patrice]

46. Good advice. For profit "health" "care" likely DOES tend to rush to prognosis. nt

[patrice]

43. Please accept my apologies, the commoditization of death seems only to make me more angry

anymore.

I feel sad for your friend, who spent her entire life doing her duty and, when she needs "her" country to be there for her, she becomes a digit in cost:risk ratios extracted from some spreadsheet.

Fuck this!

[DFW]

45. This makes me so angry I could toss chairs out of windows

In an affluent country such as ours, THIS SHOULD NEVER BE ALLOWED TO HAPPEN.

I'm glad I have a job with decent health insurance, and that my wife and younger daughter live in Germany and are insured there. My elder daughter lives in New York City, and if she ever loses her job, I will tremble every day until she gets a new one.

My heart goes out to your friend and her daughter.

[BigD_95]

47. I hate to ask this question

But y would someone getting $2000 a month in support also a business owner not have her own Ins. ?

My wife & I are currently without Heath Ins. Because I lost my job. Cobra is more then wt I get in unemployment. I just got a new job that I start wed. So I can understand reason for not having it so I'm not trying to sound like I'm crtizing

[MANative]

49. Pre-existing condition of another type disqualified her.

Our mutual business was just getting started, and had very little revenue. She had been laid off from her previous job a couple of years ago, and once her COBRA ran out, she was stuck. She was also divorced by that time, so had no options to be covered by her ex.

[BigD_95]

65. I figured it was something like that

How sad is it, she paid, I'm sure top dollar for that cobra Ins all that time & as soon as they could cut it off they did leaving her with no options. Makes me so sick to my stomach.

This is very sad news.

I worry everyday that nothing happens to my wife or me until my ins. Kicks in. We have been without since Aug. 1st. It's scary and stressful.

[a2liberal]

119. too late now but

I'm pretty sure the cobra law requires that a private plan ignore put-existing conditions when coming off continuous coveragein a group plan.

Edit: sorry, i was wrong. The provision i was thinking of is a hipaa provision and does not seem to apply to this case

[Ms. Toad]

133. You were right in the first place

Once COBRA runs out, the HIPAA conversion to a private plan kicks in. (Now that there is a gap it doesn't apply - but it would have before the gap which is something it is worth getting out there. If you are losing your job (and insurance) you are either eligible directly for a HIPAA conversation to a private plan - or you are eligible when COBRA runs out.

[a2liberal]

150. hmm

I was basing my info on this page: http://www.medsave.com/articles/Understanding-a-certificate-of-creditable-coverage.htm

I oversimplified in that if the plan does accept you and has a waiting period for pre-existing conditions, HIPAA does help reduce that waiting period. I don't think (at least according to the page) that there's anything that forces them to accept you or to cover pre-existing conditions at all. State laws might help there though?

I would love to know if something on there (or my interpretation) is wrong!

[Ms. Toad]

155. Different portions of HIPAA provide different benefits

One (described on the page you linked to) lets you transfer from one employer's insurance to another employer's insurance without a waiting period for pre-existing conditions to be covered (assuming you had been covered in the past) - or decreasing the waiting period if there was a gap in coverage.

The second aspect of HIPAA is the circumstance the friend was in. She has prior group coverage and exhausted COBRA. At that time the HIPAA individual insurance option kicked in People who are "HIPAA-eligible and are guaranteed the right to purchase some form of individual insurance coverage without preexisting condition exclusions under HIPAA if they meet the following criteria:

1) they have had at least 18 months of previous health insurance coverage without a break in coverage lasting 63 days or more;
2) their most recent period of coverage was under an employer-sponsored group plan, a church plan, or a government plan;
3) they did not lose insurance coverage due to fraud or failure to pay premiums;
4) they are ineligible for or have exhausted their COBRA coverage options or similar state continuation coverage; and
5) they are not eligible for any other employer-sponsored group plan, Medicaid, or Medicare."

http://www.familiesusa.org/issues/private-insurance/legal-rights/hipaa-definitions.html and also here.

[a2liberal]

194. Thanks! :) (n/t)

[MrsBrady]

142. if she's been uninsured for more than six months...

I would try here...
https://www.pcip.gov/

I'm sorry that you are so upset, and this is very sad...
but this is a viable solution...

Just because the doctor says people won't treat her without insurance...
that's just not right...when someone might...
and she CAN get coverage.
I would never tell anyone that. That's just mean to me.

There are options. I'm not saying she's not terribly sick and that your pain is not real...and she still may die...but
I would try to help her find a solutions.

[Catlover827]

48. Thoughts and prayers for your friend, her daughter, and you

What a terrible situation. Could she maybe get into a clinical trial at a university?

[MANative]

51. That was one of my first thoughts, and we're trying to find out if there is a program. n/t

[DhhD]

174. University medical schools do research and they grow all kinds of human cells

that can be injected back into the same person. Maybe liver cells can be grown outside the body and injected back into the liver. Muscle cells taken from the leg can be placed into the heart. They become just like the tissue around them and repair the damage after a heart attack. Same genetics so there is no rejection.

Labs grow cells from the knee area that produce cartilage. Then the numerous amount of cells are injected back into the host organism (same DNA) and they produce cartilage thus repairing the knee. No knee replacement is needed.

Seeking advanced medical methods is the answer.

[Liberalynn]

53. My thoughts and prayers are with you and your friend.

[spanone]

54. in most industrialized nations she would be provided with healthcare....god bless the usa

[hamsterjill]

55. I know I'm posting the obvious here, but this is not right.

It is NOT right that a fellow American has to die simply because they can't get healthcare, or because some stupid provision of ANY law doesn't happen to take effect until after they've passed.

I know I'm stating the obvious, but I refuse to forget things like this. I refuse to passively accept that this is okay, or that this is all this country is capable of.

I wish you all the best in assisting her in finding a solution. Please don't give up until you have found one.

[RagAss]

61. This happens every hour in this brutal country.

Know where you live.

[hamsterjill]

69. I do. I know where I live, thank you.

I just refuse to stop reminding people that it should NOT be happening.

[onecent]

56. Ohhhh my thoughts and prayers are with you and your friend and families!!!!

[DaveJ]

62. More stem cell research is needed

I think the availability of liver donations is limited, regardless of income and insurance. Stem cell research into cells for liver regeneration should be increased tenfold, not blocked by superstitious neoconservative wackjobs.

[MANative]

72. That's another major factor, even if by some miracle she could get coverage or $$ help.

Liver transplants are not easy to come by, although from the research that I've done today, there are new treatments using partial liver transplants from living donors. They tend to be used in very young patients, though. Time is not in her favor, among all the other issues.

[Ms. Toad]

127. Partial transplants are not just for very young.

A partial liver transplant can be done at any age. There are some conditions, or liver configurations, or combinations of illnesses will require a full liver - but most to not.

Florida is a very good state to be in if she can get access to coverage for her transplant. The wait list is considerably shorter in Florida than most other places.

[Ms. Toad]

134. About 8 years out from being able to grow your own liver -

they have already grown a functioning one about the size of a walnut.

But until then, yes. There are far fewer livers available than people waiting for livers - and people die on the waiting list every year. I lost 3 friends/acquaintances with the same disease my daughter has in a two month period recently who didn't make it to the top of the wait list before a liver was available.

[Patiod]

180. Absolutely

That's where the future is.

[Johnny Noshoes]

68. nt.

[chloes1]

73. Just a thought

Would your friends ex consider dropping his child support to say 1,000 or whatever is needed to qualify for Medicaid? I understand he is a prize jerk, but perhaps he would consider stopping his child support?

It really can take months or even years for any entity to catch up with the dead beats, as I know from experience.

[MANative]

77. Not sure if that would help, because from what my friend was told, the decision...

is based on what the court order $$ figure is, and not what she actually collects from him.

[MoonchildCA]

76. Obamacare can help! Now!

This shows me what a horrible sales job the Obama camp is doing. The Pre-existing Condition Plan is available now! I know--I have it. I had an extremely large fibroid, growing out of control. I didn't know what to do. My husband is self employed and we had no insurance. We were desperate and researching options and finally came across it. It is not the high-risk pool that you hear about more often, which is really costly. I'm 50 and pay $370 a month for excellent coverage. She would probably be one level up for rates. This program is paid for by the federal government and administered by the states. Just google "Florida PCIP."

I'm shocked by how many do not know about this program. Even people in the healthcare system that accept the insurance are not aware of it. I just got my friend signed up who suffers from fibromyalgia and many other associated conditions. All you need is a refusal letter from an insurance company, or a letter from a doctor or even a nurse practioner stating you have a condition--any condition. Also, you need to have not been covered for 6 months. My doctor wrote "large abdominal mass requiring surgery." That's it. We did not want to do any expensive diagnostics until I was covered.

The coverage is excellent. In network (and we have an extremely large network), it covers 85% with a $1500 deductible, and max. out of pocket is $2500. Doctors visits are a $25 dollar co-pay and prescriptions are $5 generic and $15 brand. It's so easy to sign up. In CA, if you sign up by the 15th, you are covered the first of the following month.

Please research this for your friend. And everyone, spread the word. Obamacare saved my life! And so many people that could use this now, know nothing about it.

Good luck to you and your friend.

[MANative]

78. Oh my God, Bless you! As much as I thought I knew about ACA, I was sure that the

Pre-existing conditions piece was not yet in effect. I'll get to work on this right now.

[Emit]

82. Also, contact Social Security Admin and ask about Compassionate Allowances

to see if she can streamline the application process for SSDI and get benefits sooner

http://www.socialsecurity.gov/compassionateallowances/

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.

http://www.ssa.gov/disabilityresearch/qdd.htm

We are obligated to provide benefits quickly to claimants whose medical conditions are so serious that they clearly meet our disability standards. Quick Disability Determinations (QDD) is one of our fast-track initiatives that uses technology to identify claimants with the most severe disabilities and allows us to expedite our decisions on those cases.

Usually persons determined eligible for SSDI have a waiting period of 2 years before they receive Medicare - with this fast-track program, I am uncertain yet if that same waiting period applies - can't find it yet on the SSA website.


So sorry to hear about your friend!

[GumboYaYa]

89. WOW, just WOW, I sure do hope this is true and your friend gets help.

Good luck!!!

[mzmolly]

90. I thought 2014 was the date. But upon further research I found information on a "bridge." Here:

http://www.healthcare.gov/law/features/choices/pre-existing-condition-insurance-plan/fl.html

For PCIP questions or customer service visit:

Apply by Phone

Call 1-866-717-5826 on Monday - Friday, 8 a.m. to 11 p.m. EST. TTY users call 1-866-561-1604.
Mail in a copy of the documentation showing you’re eligible.
Eligibility documentation

Please keep us posted.

[MoonchildCA]

92. This is a bridge program

To fill the gap until the entire program kicks in. After 2014, it will no longer be needed. I don't think the law has kicked in for ALL private insurance companies. This is a stand-alone plan.

[myrna minx]

84. Thank you so much for providing this life saving information.

I hope you're on the mend and am so grateful you found us here on DU!

[Ms. Toad]

128. Here is the link for the PCIP plans

https://www.pcip.gov/PCIP_States.html

I was in the process of writing a longer explanation and was just checking the rest of the thread to see if it had already been mentioned.

[renate]

114. well, that's a heck of a way to make a (almost) debut on DU!

How amazing that you saw this and had this information! Bless you!

[bluerum]

81. I am so very sorry. My thoughts are with her.

Being told to get your affairs in order is the biggest reality check that anyone can ever get.

[MANative]

83. THANK YOU so much, everyone, for your kind words and your ideas.

There are a really good handful of things that you've suggested that augment the things we're already doing, and now I need to go dig in to some major work here. I knew I could count on my DU family to help lift my spirits at the same time as offering real, practical advice. I love you all.

[myrna minx]

86. We're all here in full support of the two of you.

Make sure to give her a big hug from all of us.

[proReality]

85. Have her get a second opinion!

That's what they told my husband at first, but the second doctor and round of tests proved he had a completely different disease that was not as fatal as originally stated.

[triplepoint]

87. I Suggest This Protocol and this Website

Last edited Fri Oct 5, 2012, 08:18 PM - Edit history (1)

Nine Days of Vitamin C via IV Drip:

Day Dose (grams)
----------------------------
1...............25
2...............25
3...............75
4...............100
5...............100
6...............100
7...............100
8...............100
9...............100
-----------------------------

Buy an Omega Juicer and juice 3x per day--green vegetables only

Transplant Funding:

National Foundation for Transplants:
http://www.transplants.org/become-patient


--Stay Positive



Note:
David Crosby (Crosby, Stills, Nash, and Young) had a Liver transplant awhile back and is alive, standing, and delivering today.

[Sunlei]

93. don't give up, here call the phone numbers on the pre existing condition Gov site

http://www.healthcare.gov/law/features/choices/pre-existing-condition-insurance-plan/index.html

[okieinpain]

94. you need to get this on the news.

tweet, facebook, blogs, they will do it if they get enough bad pr.

[marezdotes]

97. Can she get help by way of Obamacare?

By that I mean, could she get insurance and be covered as a pre-existing condition? It takes a lot of work but there is help out there, somewhere. You might have to have a benefit of some kind. Put up a donation web site for her. I'm sure there are a lot of us here that would send a donation. After all, we are Dems and progressives. I'm so sorry that all of you are going through this. There is a special place in hell all set aside for her scum bag husband.

[REP]

98. She needs to apply for Social Security Disability right now; she'll be immediately Medicare eligible

With her condition, she will be sped through the SSD process but she needs to file in person (the forms are on-line; fill those out before heading to the local office).

[Emit]

100. Contact Social Security Admin and ask about Compassionate Allowances

to see if she can streamline the application process for SSDI and get benefits sooner

http://www.socialsecurity.gov/compassionateallowances/

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.

http://www.ssa.gov/disabilityresearch/qdd.htm

We are obligated to provide benefits quickly to claimants whose medical conditions are so serious that they clearly meet our disability standards. Quick Disability Determinations (QDD) is one of our fast-track initiatives that uses technology to identify claimants with the most severe disabilities and allows us to expedite our decisions on those cases.

Usually persons determined eligible for SSDI have a waiting period of 2 years before they receive Medicare - with this fast-track program, I am uncertain yet if that same waiting period applies - can't find it yet on the SSA website.


So sorry to hear about your friend!

[glowing]

101. What about medicaid? Isn't there something that could get her on the donor list?

[MoonchildCA]

102. More on Obamacare

I just pulled out my Benefit Summary booklet and organ transplants are covered. I hope you guys can expedite the application and get it all in before the 15th.

What I needed in CA was:

1. The application (really easy, about 4 pages, and no questions about medical history)
2. Proof of citizenship or residency ( a photocopy of birth certificate)
3. If last name is different from birth certificate, enclose a photo copy of a marriage certificate or something showing a name change to prove you are the same person. (A person on the phone told me to do this--it did not mention it on the website, and wanting to be thorough, I did it.)
4. The letter from the doctor, nurse practioner, or refusal from an insurance company. (CA has a sample letter on their site, which makes it as easy as" filling in the blank" for the doctor.)
5. The first premium payment.

Just wanted to simplify the process in your mind, so you have a clear idea what is needed before you're bogged down with a lot of research.

[MANative]

121. Thank you again, MoonchildCA.

This information is as good as a stack of gold bars! And welcome to the DU family!

[jerseygal]

103. Have her move to either Massachusetts or possibly Vermont

Mass has more doctors.
She can rent an apartment more cheaply in Western Mass and then apply for insurance through the Connector. She can make an appointment to see a liver specialist - perhaps in the Western part of the state at Baystate for her second opinion.

She might as well use Romneycare.

I should also add that I don't think I entirely believe what her doctor said about the prognosis of only two to three months either unless she is quite yellow, very sick and her legs are swollen.

[Ilsa]

105. I'm so sorry. I hope the comments here

can help you find help for her. I'm afraid I don't know what path to take to get her help. Let us know if we can help her.

[Lifelong Protester]

106. Another idea is the Mayo Clinic in Jacksonville

A lot of people don't know it, but the Mayo Clinic charter is such that they have to treat you, they take all comers. They do have programs that folks donate to in order for people with no money or insurance to be treated.
My spouse had a significant heart surgery in Rochester, MN at the hospital there (the clinic and St. Marys Hospital [no apostrophe intended] are separate). My husband and I have such good feelings about Mayo that we donate (small, but what we can share) to the Poverello fund. (I am not sure if I spelled that right). This fund helps patients with BIG medical needs.

Please, if your friend is not helped by many of the programs listed upthread, consider contacting Mayo. Explain the situation. They are the kind of place that if your friend had to pay $10 a week back to them because that is what she could afford, they would do that.

Thanks for sharing here and hugs to you and her. There a good folks on DU with good ideas, so you came to the right place.

[GaelicWench]

107. The Repubs idea of "death panels" regarding Obamacare

belong solely to the right. This is what we can expect if the right is in control and does away with Obamacare, which Ryan is bent on destroying.

I am very sorry to hear about your friend. There are ways around the system. She needs to be in touch with someone who knows how to do this.

[secondwind]

108. Am so very sorry with this news. so, so sorry.

[DainBramaged]

110. Her doctor is a scumsucking fuck

Isn't there an office of emergency assistance or something like that up there? Holy shit he won't even suggest any help for her?



He should be the one to have to be told such devastating news.

[MANative]

117. Yeah, this has been one of the most distressing elements of this whole ordeal.

He doesn't seem to want to be "put out" to help her figure out what to do, particularly as someone who is really all alone in the area, except for her daughter and a few acquaintances. Her mother is over 80 and lives in the mid-west, caring for my friend's profoundly disabled sister. Her father is deceased, and she does have other relatives, but none within 1000 miles. She has a cousin whom she's close to, but he lives in CA and has a family, so it wouldn't be simple for him to help provide support. I'm in CT, and she's in south FL, so I'm not close anymore. Before she moved several weeks ago, she was only 45 minutes away, and I'd have been able to do much more.

When I heard the doctor's response, I was thoroughly stunned, and told her she needed to get another opinion, pronto, then we'd work on finding help that this guy seems to be clueless about.

[catchnrelease]

130. A second opinion is essential

Just last month the husband of a good friend had to go in for emergency appendectomy. One of the pre surgery tests was a CT scan which showed that in addition to confirming the appendicitis, he had a large tumor on one kidney. He had showed no symptoms of the tumor and they were actually grateful for the appendicitis or they would not have known about it. After he recovered from the first surgery, he had the kidney removed and it was indeed cancerous. He had to have a post op visit with an oncologist who was apparently awful. Coldly told the husband that the original CT scan had shown masses/shadows on the bottom of both lungs and that he must go into a new drug trial immediately. The couple was stunned and asked if there shouldn't be further tests first. The doctor got angry and insisted on the drug trial.

So, my friends asked their provider (Kaiser) for another oncologist, who ended up being friendly, caring and said hold on, lets do another scan and we'll go from there. I found out yesterday that the tests came back and both lungs are clear--nothing there at all. It makes me furious to think that these people would have gone through the fear, stress and anxiety of thinking that the man had cancer and was taking who knows what kind of new drug, or was on a placebo and might not get well at all, just because of some jerk doctor's agenda.

So PLEASE, insist that your friend get another opinion, even if it seems useless, otherwise you won't know if she might not be as bad as she was first told. Good luck to all of you.

[catbyte]

111. Hugs to you, your friend, and her precious daughter

Broadcast it loud far and wide. She is still alive and where there's life there's hope call the media. Call your Congress reps, call any and everyone. Don't give up. I will keep all of you in my heart.

[Third Doctor]

113. This should not be happening in the richest country in the world!

Almost half of the population are selfish bastards who only care if themselves and their own family have health insurance. I really hope your friend's ex finds a soul and offers to help. If not hell awaits him imo.

[ProfessionalLeftist]

115. Do tell her to contact SS and Medicaid to see if they can help.

It seems like with a life-threatening situation like this and no insurance, she might be qualified for something.

[renate]

116. if nothing else, maybe your friend's ex can be persuaded to pay up...

... to save him the trouble of raising his child. Seriously. Because he's going to have to do it if anything happens to your friend, and I don't think he'd like that any more than his daughter would.

Whoever said that his daughter would never forgive him if he let his ex/her mother die when he could have prevented it is absolutely right. He might not care about that, of course.

Good luck! I hope the advice you got from MoonChild above is just what you needed! Tell your friend she has a lot of people thinking about her and wishing her the best.

[MANative]

118. I will give the ex credit for one thing: he does love his daughter, BUT...

he has NO idea how to be a parent. His idea of parenting is buying her whatever she wants (a new iPad two months ago), and taking her out for dinner. She would become a self-indulgent snot with his influence alone, I fear.

[freshwest]

125. Since he is paying child support, it seems as if Medicaid could go after him.

That is, although it's not the daughter that is sick, but he has a legal relationship to his wife, perhaps. And if he does have money, it seems they might go to him for it.

This is something I truly don't know, and some years back the insurance companies didn't want to do much in the way of tranaplants, saying they might not work out.

So many families have been detroyed and lives lost due to our not being able to get a social democratic system of care in place, funded by income taxes. As long as the American people keep their ancient notions that taxes and the government are all evil, nothing can be done to bridge the gap. I grieve for you and her and this girl.

[mwblueyarn]

126. If neither of you has tried this yet,

I'd also contact her Congressman and both her US Senators. I understand she's in FL and how awful most politicians there are, but even there, one would hope they have constituent service staffers who would help her find out if the ACA or other programs can be used. At least here in Minnesota, I know they tend to be very helpful in situations like this. What a travesty that anyone in this country has to endure such stress in the case of life-threatening ilness. Sending all good wishes to you and your friend.

[Ms. Toad]

129. If she has been without health insurance for 6 months

She is eligible immediately for insurance under the high risk pool for her state. The rates are very cheap and pre-existing conditions are covered. It may be a lot easier to raise the money to pay for insurance than for a liver transplant. https://www.pcip.gov/PCIP_States.html (Someone upthread mentioned this - I already had this drafted when I skimmed the thread)

In addition, she should apply immediately for SSI or SSDI (whichever she is eligible for). That will get her access to Medicaid or Medicare (although with Medicare there is a waiting period, so the intermediate insurance will be critical.

Unfortunately, the bar isn't just at this stage - she will need to demonstrate that she can pay the high prescription costs going forward (in the range of $100,000/year) to maintain the liver (anti-rejection drugs). She will also need to show she has a social support system - but it sounds as if that won't be a problem.

Many people who need transplants do a lot of fundraising to set aside the money needed to show the transplant team the liver will not be wasted.

Feel free to PM me if information might help. I tend to stay up on both access to medical care and transplant issues because my daughter will eventually need a liver transplant (for primary sclerosing cholangitis - and if that is your friend's disease I can point her to a fantastic community for support).

[dkf]

154. Is that $100,000 for Rx after PCIP?

[Ms. Toad]

156. Different issues

Cost of the medication - Anti-rejection drugs are expensive - part of qualifying is to make sure that you will be able to pay for them going forward. The cost is around $100,000 a year.

How the medication is paid for - PCIP (other insurance, Medicare, Medicaid are ways to pay for the medications). Those will each have their own rules about what your out of pocket portion of the cost will be.

If you have PCIP insurance (or whatever follows, since PCIP vanishes in 2014), most of the cost will be paid by the insurance company. How much will vary depending on the plan. PCIP benefits under the federal plan (if the state didn't enact one) are here: http://www.pciplan.com/forms/pdfs/2012BenefitsSummary.pdf The costs range from $10 for a 90 day supply to $500 for a 90 day supply. Generally more than one anti-rejection drug is required and I would not be surprised if more than one were classified as specialty drugs (the $500/90 days cost) - but you'd have to check each drug.

[dkf]

164. I guess it's a matter of practicality to make sure a transplant recipient can pay for their care.

But it seems wrong that a person literally has to pay to live.

We need single payer.

[Ms. Toad]

182. I absolutely agree about single payer -

but it is also more than just financial practicality. People die on the waiting list all the time. In August & September I lost three friends/acquaintances with the same disease my daughter while they were waiting for a livers. In 2009 (the last year for which I could quickly find data) 2723 people either died on the waiting list or were removed because they had become too ill to be candidates for transplant any longer. That same year 5975 received livers through transplant - which means there was a shortfall of 31% of the livers needed. (And that doesn't count all those eligible for transplant who just weren't sick enough to rise to the top of the list or die - another 7000 or so people.) There aren't enough organs available and the ones that are available need to be allocated to the people who (for a variety of reasons) are most likely to be able to put them to full use.

If you are unable to follow a rigid drug regimen your body will destroy the new liver. If you can't get access to the drugs in the first place your body will destroy the new liver. If you are an alcoholic who has seen the light and reformed only when you already needed a transplant, you may not have developed the new habits necessary to keep your alcoholism under control putting the new liver at risk. If you do not have a support system to help you during the approximately 6 month recovery period you may be unable to participate in the appropriate follow-up care necessary for you and your new liver to adjust to each other.

Even if we take money out of the picture, there are other factors which will keep people off the list merely because it isn't fair to the loved ones of the person who gave the gift of life - or the other similarly desperate individuals on the waiting list - to "waste" the liver. But we should absolutely take money out of the decision tree. The Affordable Care Act is a huge step in that direction because people who cannot afford insurance at all can get it for free and in many cases with no co-responsibility. Where the crunch comes still are those middle income folks who make enough money not to get subsidies - but for whom co-pays and co-insurance are still real money.

[dkf]

186. It broke my heart when I heard that kids in foster care sometimes are ruled Ineligible

For those reasons.

And what a tough thing for your daughter and you... Crossing my fingers that she will have a long long time if ever before this is a concern. :hugs:

[Ms. Toad]

187. It isn't an absolute ineligibility -

but the state has to take the responsibility of finding a stable home that will be able to provide the specialized care those kids will need. Here's a hopeful story along those lines: http://seattletimes.com/html/localnews/2009821351_apwafosterhearthtransplant.html

As for my daughter, the limbo we are in right now is tough. Some people with her disease go into a sort of remission and can live a normal life. So far she has not been able to - she sleeps 12-14 hours a day (and stills as if she has the flu all day long every day), and can only handle half time enrollment at her college. So do I wish her a long time in this condition? That seems cruel. On the other hand, while a transplant would dramatically improve those aspects of her quality of life, she is trading one illness for another kind of illness. I guess I hope she holds out long enough to grow her own liver (probably 7-8 years out) so she will not have the post transplant issues associated with receiving someone else's liver.

[kestrel91316]

136. Get her signed up for the PCIP plan IMMEDIATELY.

http://www.healthcare.gov/law/features/choices/pre-existing-condition-insurance-plan/fl.html

Affordable Care Act has a Pre-existing Condition Insurance Plan. Move heaven and earth to get her onto it immediately.

[MrsBrady]

143. +1 PCIP is in effect now! n/t

[MoonchildCA]

157. Yes. And it is easy to get in to

I have it, and posted about it above. And the reason I'm posting again is because I need to get my post count up so I can start my own thread. I really want to make people aware of this program. It has been a life saver for me, and will be for a friend of mine as well.

Now, one more post and I'm good to go... :p

[Chorophyll]

175. ^^^This.

[sendero]

137. Such sad news...

.. but I hope everyone here will stop and think for a moment. If you think for a second that if she had a great insurance policy that she would likely find a replacement liver in that time frame, you should take a closer look at our transplant system. The waiting list is long.

[tblue]

140. Call around to hospitals

My SIL was in the same boat almost. My hubby called a major hospital in NJ and they were willing to take her pro bono. Unfortunately she was so bad off at the time she died before we could arrange the transfer.

Please do not give up! Make some calls and you might find a kind soul. Insist on speaking to the department head, out of state if necessary. She and her family are worth the effort.

[Catherine Vincent]

141. :(

[DebJ]

145. Oh my Lord that is so heart-breaking. Prayers for all. n/t

[midnight]

146. K&R Free health care for all....

[waterwatcher123]

147. May you and your friend be blessed with good fortune.

I am not sure if this will help in your friends case. But, there is a wonderful documentary called "Forks over Knives" that talks about how the standard American diet (basically processed food, sugary drinks, meat and dairy) represents a one way ticket to a future of health crises and degenerative diseases. I have been a vegan or vegetarian for at least 35 years and this movie was so convincing that I absolutely changed my diet overnight. My wife watches it every so often too just to keep reminding herself that good health is possible even in a toxic world (food and pollutants).

I am not sure if your friend would benefit from this approach. But, it beats taking drugs and there is very little to lose by giving it a shot. We purchased the Forks over Knives cook books and they have all sorts of plant based recipes that taste good too. Another really good series of recipes are located in the back of John Robbins "May All be Fed: Diet for a New World".

Best wishes and I hope your friend listens to her heart and not the prognosis of her doctor. Hope is another very powerful antidote.

[BlancheSplanchnik]

149. I wish I had more to offer besides my heartfelt sympathy

and my rage at a system that says "fuck you if you ain't got the money".

I'm really glad there are other posters here who have good suggestions for real help.

[Pathos1503]

151. Try Masons and Shriners

Hi,
You might try getting in touch with the Grand Lodge of Masons in Fla., tell them the situation and see if they can help raise money for the transplant. Also the Shriners may be able to help. That's what these guys do. Call them first thing on Monday and check with the masons in her area. Time is of the essence.

[Indpndnt]

153. Good suggestions.

Welcome to DU!

[Savannahmann]

152. Senator John Kerry

famously asked what you say to the last soldier to die in Viet-Nam. I wonder what we'll say to the family of the last uninsured person to die because of the lack of basic coverage for all our citizens? It is heartbreaking, and my sympathy goes out to you, and your friend, and her family.

[Ken Burch]

158. Go to the media...NOW(especially any tv in your area)

Tell them what the doctor said, and have them call hospitals(posing as someone in your friend's situation)asking if they can get the treatment she needs without health insurance. Busts the ones who refuse her. If nothing else, this may create pressure on the hospitals in the area to do the right thing and save your friend's life.

What those hospitals are saying, if her doctor is correct, is that your friend must die to save their profit margins.

I don't want to put this in political terms...but rather human ones...it will take guerrilla tactics to get the medical-insurance complex to do what's right here.

Please let your friend know that a lot of us are thinking of her and her child in this time.

C'mon DU'ers...let's do what we can to save this woman. It's what we're all about.

[lillypaddle]

163. that is heartbreaking news

I am so sorry.

[littlemissmartypants]

165. MANative

please know that like many others here have expressed, there is a strong positive force ready to lift you and your friend up. Please tell her we are on your side. LMSP

[juajen]

168. This is a pre-existing condition. Can't she get insurance now under Obamacare? Special

circumstances. Isn't Kathleen Sibelius in charge of health care? Really, this just should not happen.

[waterwatcher123]

169. Wishing You and Your Friend Good Fortune

I am not sure if this will help in your friend's case. But, there is a wonderful documentary called "Forks over Knives" that talks about how the standard American diet (basically processed food, sugary drinks, meat and dairy) represents a one way ticket to a future of health crises and degenerative diseases. I have been a vegan or vegetarian for at least 35 years and this movie was so convincing that I absolutely changed my diet overnight. My wife watches it every so often too just to keep reminding herself that good health is possible even in a toxic world (food and pollutants).

I am not sure if your friend would benefit from this approach. But, it beats taking drugs and there is very little to lose by giving it a shot. We purchased the Forks over Knives cook books and they have all sorts of plant based recipes that taste good too. Another really good series of recipes are located in the back of John Robbins "May All be Fed: Diet for a New World".

Best wishes and I hope your friend listens to her heart and not the prognosis of her doctor. Hope is another very powerful antidote.

[grr8wine]

170. Damn

[riderinthestorm]

171. Coming to this thread late, after so many other great suggestions upthread.

So I'll just kick and rec for more eyes on this terrible tale.

My sister just received double transplant in February so I know the emotional whammy of this. I really hope the PCIP insurance can be worked out otherwise it will be pretty hard for her to get her transplant.

We need single payer now. Our present system is the real death panel!

[Plucketeer]

177. I left my Ex 30 years ago

And she's managed to just eke by all along. If something like this hit her, I'd at least try to do something. Wouldn't be much cause me an' #2 are just getting by ourselves, but I'd try anyway as the Ex and I did produce 3 fine kids.

My heart goes out to this gal, her daughter and you. Positive thoughts to you all.

[MANative]

183. I am overwhelmed by your thoughtful responses.

My friend is still in a bit of shock, as I'm sure you can imagine, but is stunned and immensely grateful for the outpouring of helpful advice from people who don't know her. (She's a right-leaning centrist, and was flabbergasted when I told her that a bunch of awesome, crazy Dems had leaped to her aid!) I've been busy digging into the details of the suggestions offered by so many of you, so please forgive me if I haven't responded to each offered idea. There are several suggestions here that will likely provide real solutions, and are being actively pursued. There's a lot of work to do, and unfortunately some of them can only be done by my friend rather than a surrogate, but we've got some great paths to follow and I'll be working side-by-side with her as much as is allowed. Thank you from the bottom of my heart.

[Sekhmets Daughter]

184. Have you looked into this

http://www.ehow.com/about_5673429_private-grants-liver_transplant-patients.html

[libodem]

185. Maybe she could run away to Canada?

Would they help her there?

[MANative]

190. Kick for update and thanks n/t

[grantcart]

191. Wonderful thread, great responses. It kind of struck me that this is not quite what Palin thought

us liberals would be about when she was talking about 'death panels'.

[MANative]

192. Anything that discredits that pitbull with lipstick is A-okay in my book!

[GreenPartyVoter]

193. *hugs, vibes, and prayers*