ALS patients contend with $158K price tag on new drug

AP ^ | 17 Dec 2022 | MATTHEW PERRONE

[blueplum]

WASHINGTON (AP) — For two years, Becky Mourey pushed the Food and Drug Administration to approve an experimental drug for her Lou Gehrig’s disease.

She went to members of Congress and health regulators to make the case for Relyvrio, until patient-advocates finally prevailed.

In September, Relyvrio became only the third drug approved in the U.S. for ALS, or amyotrophic lateral sclerosis, an incurable neurodegenerative disease that is usually fatal within five years. But patients and physicians who celebrated Relyvrio’s approval several months ago are now contending with the obstacles posed by the U.S. health care system.

Their odyssey is an object lesson in the soaring cost of specialty drugs and the byzantine systems that insurers have created to try and control them....

[blueplum]

"Relyvrio is a powder-based formulation that combines two older ingredients: a prescription drug for liver disorders and a supplement used in traditional Chinese medicine that’s available on Amazon.com for about $1 per day’s supply....Sarah Nauser, a former police officer, says her insurance has covered the prescription ingredient in Relyvrio — sodium phenylbutyrate — for a $10 copay since 2020...."

Hopefully, AP spelling out at least one ingredient will help those faced with $5K/mo or more 'co-pays'.

[qwerty1234]

I have a friend that works at one of the big pharma’s - they have a new drug waiting for final FDA approval anytime now that will cost - wait for it - $2.6Million dollars - *for a single shot* (at least you only need one shot).

You think drug prices are bad now - just wait - this is going to become more common in the years ahead. The gravy train is just getting started.

[caddie]

Definitely should not cost this much for two small molecules in a fixed-dose combination.

Big Pharma has a great opportunity here to rebuilt some of its obliterated credibility.

But no, they gotta screw the terminally ill patients.

Smooth move, ex-lax.

[who_would_fardels_bear]

There is a YouTube series by a Dr. Tour who is a synthetic chemist. He is explaining how difficult abiogenesis is, i.e. getting life from non-living chemicals. However, in doing so he makes it clear that building even simple molecules from scratch can require a number of complicated steps each with low yield. I could see how some medicines could be quite expensive if the development process is new and the demand is low.

[Georgia Girl 2]

I think its going to be a fairly short gravy train. When the med beds roll out all this stuff will not be necessary and will disappear.

[blueplum]

getting FDA approval is one thing - getting insurance companies to pay for it is another

Sometimes it’s cheaper to go on an extended vacation to, say, Ecuador for treatment than pay US prices