Post date: Jan 19, 2018 3:38:19 PM
Children are dying for one reason...Greed. This is a difficult story to tell, but here it goes. There is a catastrophic seizure condition called Infantiles Spasms/West Syndrome that strikes children between the ages of 0-2 mostly. This seizure condition causes massive developmental regression often leaving children with cerebral palsy, brain damage, unable to eat, and often even leads to death. There have been readily available inexpensive treatments for this condition since the 1950s when ACTH Acthar Gel was discovered as a treatment for the condition. In the early 2000s ACTH was about 40 dollars a vial and children were able to get treatment quickly which saved countless lives. Fast forward to today when the drug was purchased by Mallinckrodt and the price is currently 45,000 a vial delaying treatments and leading to endless fights with insurance while children are left to seize causing brain damage and death in the US. Treatment delays fighting to get ACTH for my daughter left her to seize for days on end, and she is now tube fed and suction dependent needing 24/7 monitoring and care. Just across the border in Canada the Synthetic form of ACTH costs a few hundred a vial and children are saved. There is another drug on the market for treating infantile spasms called Vigabatrin/Sabril. After seeing what happened with ACTH Lundbeck the manufacturers of Sabril, Sabril/Vigabatrin is another frontline treatment for Infantile Spasms, decided they would try to make as much money as possible before their patent ran out on Sabril so they raised the price from a few thousand dollars a month to now over 26,000 a month (2 packets a day cash price) and as soon as the patent ran out Lundbeck pulled back from their programs to supply Sabril and the generics aren't supplying enough either leaving children to go without the medication and seize. This is the failure of the current US pharma and healthcare system. A disease that is readily treated in nearly every other industrialized country is killing and destroying children's lives through seizures and brain damage. I have written extensively about the ACTH issue and so have others. I am writing this to highlight the unfolding of the Vigabatrin/Sabril issues in the US, because they are much less known but still critical to understanding the faults of the US system.
There was some hope in the community of over 5,000 families and those effected by Infantile Spasms/West Syndrome as Lundbeck's patent ran out on Sabril in the US that the price of the treatment would come down once the generic competitors entered the market, but in an action of sad greed the generic entered the market just below the price of Vigabatrin at 500 dollars cheaper. Lundbeck then began to drastically scale back their drug assistance program SHARE. This has led to the fights with insurance, and prescriptions not being filled because they don't say brand name only on the prescription and other issues...all of which lead to children relapsing into seizures. In Canada the price for Vigabatrin according to a family up there is 1 dollar a packet or about 60 dollars a month. The drug companies, in this case Lundbeck and Mallinckrodt had a rather ingenious system, they would use their "charities" to cover their drastically inflated drug price's copays for families then once insurance kicked in and began paying they made a killing on the drug while they were able to maintain their monopolies. This then led to the companies deducting the "charitable contributions" as a tax deduction and their orphan drug tax benefits (now the Rare Disease community needs much of this orphan drug tax benefit to entice companies to work on these diseases, but it was abused in this case). All the companies are holding the price of Sabril/Vigabatrin artificially high waiting for the music to stop and the artificially high price ceiling to fall. In the mean time children with Infantile spasms are left to seize without their medication, because of our woefully corrupted system, and United States undying push to allow drug companies to do as they wish.