To: Sylvia Burwell, Secretary of Health & Human Services, Francis Collins, Director of NIH, President Donald Trump, The United States House of Representatives, and The United States Senate
Make Americans' prescription drugs affordable again! NIH Director Collins & HHS Secretary Burwell...
HHS Secretary Sylvia Burwell and NIH Director Francis Collins: many members of Congress have asked you to please use the authority granted to you by the 1980 Bayh-Dole Act, to review and override patents of the hundreds of drugs so many Americans need, but can no longer afford. In the past three years, extreme price hikes of as much as 75% by companies like Turing & Valeant have placed these medicines out of our reach.
Many of these same same drugs cost seven and eight times less in Europe and elsewhere.
While you reportedly deliberate the value of overriding patents of one or two drugs on a case by case basis, (as you said in a recent public statement) we Americans, especially those of us with chronic diseases like MS and Parkinsons, are left hanging, our health suffering. We need our medications, and many are making, or have already made, difficult decisions about doing without them.
Understand that is a public health crisis requiring urgent and immediate action on a far greater scope on your part. If you take your time picking and choosing, an increasing numbers of Americans will require higher levels of care as we lose the ability to afford our year-round, needed meds. Imagine the long-term cost to our shared National Debt.
Many of these same same drugs cost seven and eight times less in Europe and elsewhere.
While you reportedly deliberate the value of overriding patents of one or two drugs on a case by case basis, (as you said in a recent public statement) we Americans, especially those of us with chronic diseases like MS and Parkinsons, are left hanging, our health suffering. We need our medications, and many are making, or have already made, difficult decisions about doing without them.
Understand that is a public health crisis requiring urgent and immediate action on a far greater scope on your part. If you take your time picking and choosing, an increasing numbers of Americans will require higher levels of care as we lose the ability to afford our year-round, needed meds. Imagine the long-term cost to our shared National Debt.
Why is this important?
Due to corporate financial game-playing, thousands of Americans are presently living without meds they need; medication they could afford only two and three years ago. Why? Between 2013 and 2015, a recipe of cold-hearted greed stirred in with a giant cup of NO regulations to cap prescription drug prices, created a feeding frenzy for a handful of huge shark-like pharmaceutical companies.
Led by Valeant and Turing, they each began to buy up smaller companies, often ones with high quality medications which had been painstakingly developed but were soon to go off-patent; next, Research departments were tossed in the trash to save money, and last, the corporations each seemingly went on a two year Bachanalian tear, maniacally and arbitrarily jacking up prices of their newly acquired drugs by as much as ten times. It was as if they were no longer human, (certainly without hearts), partying in an alternate universe where they completely forgot that in ours, people actually need these drugs to get, or remain healthy.
Next, these skyrocketing new prices were/are still inexplicably accepted by Medicare-contracted Health Plans like United Health, who then makes its customers pay the cost; they raise (and accept) our monthly premiums, yet make our drugs inaccessible by requiring that in each new year, just when we need to renew our next prescriptions, we have to initially pay out of pocket until we reach as much as $3,000, (an amount most of us don't have available). This is simply wrong.
My personal story? I'm 60 years old, retired on Disability for eight years due to Parkinson's, diagnosed in 1999. In January 2015, a Valeant-owned Parkinson's drug I'd been taking for a number of years (Tasmar) rose to an unaffordable $1800 for a one month's supply, an amount I foolishly didn't question back because I need this drug to be able to move, and was still drinking the Kool-aid with a slogan that said, "This is just what some drugs cost!"
I bit back my frustration, and used my credit card to pay my local pharmacy the $1800.00 in three mothly installments.
However, in January, 2016, the same 45 pills rose to a surreal $2,259.00. This time I Googled Valeant, discovering that Tasmar's generic, Tolcapone, was also owned by Valeant, and would cost me "only" $1800.00 at Rite Aid, my pharmacy. As it turned out, United Health now preferred that I switch to Tolcapone, recommending me to their "preferred pharmacy" list. The closest was Walgreens, where my generic would cost me a lean $1500.00, which I was expected to be grateful for.
This had turned into the Twilight Zone, and I refused to enter it. Instead I began to learn more than I wanted to know about these games being played by the big pharms and insurance companies. I learned that Walgreens had cut a deal with Valeant late last year, and then last month, United Health cut a deal with Walgreens.
I'd already started a campaign (and petition) against Valeant, but then they struck again. In March I was prescribed Xyfaxan, a specialized, but highly effective GI antibiotic, soon after advertised during the Superbowl. My GI doctor warned me that Xyfaxan was "sort of expensive" but added that her office might be able to obtain free samples from Salix (now Valeant). She couldn't pull it off, but luckily, my GP did, giving me a two-month supply. The cost to me would have been $650 for one month.
What if he hadn't done this? What about everyone else who needs this very useful drug? Why is this legal? Furthermore, why should customers needing their medications have to carry the cost of a pharm's TV advertising?
Here's the BIG QUESTION: The FDA imposes rigorous standards before medications are deemed safe enough to be released for public use, yet there is no equivalent regulation or capping of prices which would allow us to afford to buy these same medications. WHY NOT? This is a national crisis and will burden our national budget as we are denied drugs we need and require increased levels of care. This must be addressed through immediate action! Please take notice!
Led by Valeant and Turing, they each began to buy up smaller companies, often ones with high quality medications which had been painstakingly developed but were soon to go off-patent; next, Research departments were tossed in the trash to save money, and last, the corporations each seemingly went on a two year Bachanalian tear, maniacally and arbitrarily jacking up prices of their newly acquired drugs by as much as ten times. It was as if they were no longer human, (certainly without hearts), partying in an alternate universe where they completely forgot that in ours, people actually need these drugs to get, or remain healthy.
Next, these skyrocketing new prices were/are still inexplicably accepted by Medicare-contracted Health Plans like United Health, who then makes its customers pay the cost; they raise (and accept) our monthly premiums, yet make our drugs inaccessible by requiring that in each new year, just when we need to renew our next prescriptions, we have to initially pay out of pocket until we reach as much as $3,000, (an amount most of us don't have available). This is simply wrong.
My personal story? I'm 60 years old, retired on Disability for eight years due to Parkinson's, diagnosed in 1999. In January 2015, a Valeant-owned Parkinson's drug I'd been taking for a number of years (Tasmar) rose to an unaffordable $1800 for a one month's supply, an amount I foolishly didn't question back because I need this drug to be able to move, and was still drinking the Kool-aid with a slogan that said, "This is just what some drugs cost!"
I bit back my frustration, and used my credit card to pay my local pharmacy the $1800.00 in three mothly installments.
However, in January, 2016, the same 45 pills rose to a surreal $2,259.00. This time I Googled Valeant, discovering that Tasmar's generic, Tolcapone, was also owned by Valeant, and would cost me "only" $1800.00 at Rite Aid, my pharmacy. As it turned out, United Health now preferred that I switch to Tolcapone, recommending me to their "preferred pharmacy" list. The closest was Walgreens, where my generic would cost me a lean $1500.00, which I was expected to be grateful for.
This had turned into the Twilight Zone, and I refused to enter it. Instead I began to learn more than I wanted to know about these games being played by the big pharms and insurance companies. I learned that Walgreens had cut a deal with Valeant late last year, and then last month, United Health cut a deal with Walgreens.
I'd already started a campaign (and petition) against Valeant, but then they struck again. In March I was prescribed Xyfaxan, a specialized, but highly effective GI antibiotic, soon after advertised during the Superbowl. My GI doctor warned me that Xyfaxan was "sort of expensive" but added that her office might be able to obtain free samples from Salix (now Valeant). She couldn't pull it off, but luckily, my GP did, giving me a two-month supply. The cost to me would have been $650 for one month.
What if he hadn't done this? What about everyone else who needs this very useful drug? Why is this legal? Furthermore, why should customers needing their medications have to carry the cost of a pharm's TV advertising?
Here's the BIG QUESTION: The FDA imposes rigorous standards before medications are deemed safe enough to be released for public use, yet there is no equivalent regulation or capping of prices which would allow us to afford to buy these same medications. WHY NOT? This is a national crisis and will burden our national budget as we are denied drugs we need and require increased levels of care. This must be addressed through immediate action! Please take notice!