High Cost Orphan Disease Drugs Explained
High Cost Orphan Disease Drugs Explained.
Orphan Diseases are rare -- typically less than 200,000 people in America have a particular orphan disease.
One example of an orphan disease is Cystic Fibrosis. It is a genetic disorder that causes chronic and severe lung infections and decreased absorption of nutrients in the intestines. People with cystic fibrosis used to only have a lifespan of 20 to 30 years. Now their lifespan is 47 years on average. About 40,000 people in American have cystic fibrosis.
There is a new medication for cystic fibrosis called Trikafta that has been available since 2019. However, the drug costs $200,000 per year and is unaffordable for many self-funded employers.
The maker of Trikafta is Vertex Pharmaceuticals. Almost all of Vertex's revenue comes from just this one medication--Trikafta. Vertex has a market capitalization of $123 billion... making it larger than the largest private equity firm Blackstone, the massive delivery company UPS and one of the largest banks in the world Citi Group.
The Affordable Care Act enabled runaway costs for medications when it eliminated the lifetime max for insurance plans. With no lifetime max, employers now must pay whatever exorbitant price a pharmaceutical company charges.
If one drug for one orphan disease can create one of the most valuable corporations in America, our current employer-based model of drug payment may not be sustainable.
Alternative solutions for employers are discussed.
Sources:
https://www.fiercepharma.com/pharma/v...
https://www.cbsnews.com/colorado/news...
https://intmed.vcu.edu/media/intmed-d...
https://www.cfroundtable.com/copy-of-...
https://www.cnn.com/2024/06/20/health....
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