Brian lost his Kaiser coverage last month and this month we had to pay full price for his aricept. It runs over $200 per month. He will get his Kaiser coverage back January first and will go back to paying $50 per month. This is a tier three drug, like an orphan drug but many more people need it so the price comes down. In the meantime, aricept does have a program that we qualify for if you have a certain income level and no drug coverage. They pay the costs of the aricept. Obviously, it is a great program. But isn’t it a shame that people on social security disability have to pay the high costs we pay for our medicines that are literally life saving?
The estimated cost of bringing a single drug through screening processes and FDA procedures to obtain approval is between $350 – 500 million. Companies spend nearly $21 billion just on research and development for treatments and it can take up to 10 years just to bring a single drug into the market. Prior to the Orphan Drug act, very few orphan drugs were brought to market.
In 1983, the Orphan Drug act was introduced to facilitate the development of orphan drugs and other medical products by offering incentives such as seven years of marketing exclusivity after approval of the orphan drug product and offering research grants to reduce the costs incurred in the development of orphan products. A rare disease is considered one that occurs in less than 200,000 individuals in the U.S. Since passage of the Orphan Drug Act, more than 300 drugs to treat rare disease have come to market to help an estimated 12 million Americans. This has been confirmed online by Janet Woodcock, director of FDA’s Center for Drug Evaluation and Research.
My question is, Is this enough? There are over 6000 recognized rare diseases. I am grateful they have Letairis for me (especially if it works) and Aricept for Brian. But my heart goes out to those parents who’s children are diagnosed with a rare disease and there is no drug to help them. I know that companies have to answer to their shareholders to make money and yes the Orphan Drug Act has helped. I can only quote statistics I have found. I don’t have the answers. I just feel so badly for those poor parents and their children who still need a miracle drug. I feel guilty to be so lucky that Brian and I have drugs to help us.
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2 comments:
That was very educational.
As many people who know me know, I have had interest, for quite some time, in HIV and AIDS. I took classes about it at UC Davis and read books about it when I can find them. I have recently read two non-fiction books about AIDS in Africa. One was called "There is No Me Without You". It was about a woman who took care of children with AIDS in Ethiopia. He's was an amazing story of giving all you are for the betterment of others. The other book was called "We Are All the Same", and it was a story about a young boy afflicted with AIDS who tried to change the world one mind at a time. Both books were amazing, and both books made me frustrated and angry. Both books related information about about drugs and research that have been made readily available to wealthy countries - drugs that are keeping Americans alive and healthy while babies in Africa die in the thousands every day. But the drug companies are not all to blame. In one case, an American drug company offered to supply South African children with AIDS the necessary drugs to keep them healthy. The South African government turned down the drug company offer stating that if the children of dying parents remain healthy, then the children will survive to become orphans that will be a drain on the state. Shocking! But true!
Will a day ever come when governments and drug companies will decide people are more important than money? I highly doubt that will ever happen. So as much as we'd like to look at these various situations (in other countries as well as our own) and find it sad and shocking, I don't think it will ever be sad and shocking ENOUGH for things to change.
You are so right, Jacey. And just as you found, education is our first line of defense. Whomever said "Ignorance is bliss," was definitely wrong in this case. Knowledge is power over any disease. And I have to agree, I do not think that these problems will ever be sad enough or shocking enough to warrant the changes needed. No one can walk a mile in my shoes.
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