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Thu Dec 5, 2019, 08:23 AM

Baby denied life-saving drug by Louisiana Medicaid

From https://www.wbrz.com/news/baby-denied-life-saving-drug-by-louisiana-medicaid/

Baby denied life-saving drug by Louisiana Medicaid

December 02, 2019 7:18 PM in News
Source: WBRZ
By: Brittany Weiss

BATON ROUGE - The most expensive drug in the world could be a possible cure for a 16-month-old boy.

Axel Dennis was diagnosed with Spinal Muscular Atrophy Type 1 at five weeks old. SMA is a genetic disease the affects muscle movement. Axel's mother, Andrea James, says her son's muscles aren't getting messages from his brain.

[...]

Earlier this year, the FDA approved Zolgensma for children with SMA under the age of two. The infusion halts the disorder in its tracks and doesn't allow it to progress further. The single-dose drug has been praised by the SMA community but it's incredibly expensive at more than $2 million.

Axel's Louisiana Medicaid has refused to cover the cost.

[...]



More at link.

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Reply Baby denied life-saving drug by Louisiana Medicaid (Original post)
sl8 Dec 2019 OP
lapfog_1 Dec 2019 #1
Haggis for Breakfast Dec 2019 #6
Hoyt Dec 2019 #2
abqtommy Dec 2019 #3
marble falls Dec 2019 #4
Midnightwalk Dec 2019 #5

Response to sl8 (Original post)

Thu Dec 5, 2019, 08:27 AM

1. $2 million?

???

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Response to lapfog_1 (Reply #1)

Thu Dec 5, 2019, 10:08 PM

6. It is UNCONSCIONABLE that ANY life-saving medication

costs that much. Exactly who does Big Pharma think has that kind of money ? Why even bother to make an orphan drug if you're going to charge that much for it ?

I am so sick of drug companies deciding who lives and who dies all because of who can afford their extortion. And insurance companies are just as parasitic.

This is outrageous.

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Response to sl8 (Original post)

Thu Dec 5, 2019, 09:00 AM

2. Sad. Novartis is a Swiss company. Apparently all major US insurers cover Zolgensma, although

some have additional restrictions above FDA requirements.

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Response to sl8 (Original post)

Thu Dec 5, 2019, 09:07 AM

3. Corrupt people manage corrupt systems to determine who will die. They make me rage and cry.

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Response to sl8 (Original post)

Thu Dec 5, 2019, 11:12 AM

4. You got to understand the full picture ...

Are we going to have corruption in Louisiana or help out a kid. Welcome to Loosiana. Where's your wallet?

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Response to sl8 (Original post)

Thu Dec 5, 2019, 11:45 AM

5. Some more information

I was curious so I did some searches.

First Zolgensma is a single dose gene therapy that stops the progression of SMA.
ZOLGENSMA is an adeno-associated virus vector-based gene therapy indicated for the treatment of pediatric patients less than 2 years of age with spinal muscular atrophy (SMA) with bi-allelic mutations in the survival motor neuron 1 (SMN1) gene.

[link:https://www.zolgensma-hcp.com/?gclid=EAIaIQobChMIxun6seSe5gIVQx6tBh3YywJIEAAYAiAAEgJEV_D_BwE|]

As of May 2019 the NHS had negotiated a better price on the previous drug Spinraza. Spinraza was the first and only approved treatment for SMA.
Spinraza, which is administered by spinal injection every four months, has a U.S. list price of $750,000 (£581,122) for the first year and $375,000 (£290,561) annually thereafter.

Britainís healthcare cost agency, NICE, said in August it could not recommend Spinraza as a cost effective treatment. The rejection came despite a lower British price tag of 450,000 pounds for the first year and Biogen offering an undisclosed discount to the National Health Service.

[link:https://uk.reuters.com/article/uk-biogen-england/nhs-england-biogen-reach-deal-on-pricey-drug-for-deadly-disorder-idUKKCN1SK2QH|]

The UK was able to get the previous treatment at half the price than the US but didnít approve it until they negotiated an even lower price. The article says the NHS wouldnít disclose that price.

Iíd think that as a one time treatment Zolgensma would be cheaper, but I couldnít find anything about where the NHS is in the process of deciding whether to approve.

My conclusions are that Americans are clearly being gouged by pharmaceutical companies. But also any healthcare system will make decisions on what treatments are affordable. I hope the NHS decides to approve Zolgensma.

Iíd also prefer to be under a consistent more rational and functional system such as the NHS even though I disagree with some here about how to get there.

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