Drugs for rare diseases
Thirty years ago, Congress acted to spur research on rare diseases. Today, we have hundreds of new drugs — along with runaway pricing and market manipulation, as drugmakers turn a law with good intentions into a profit engine.
Her vision failed first.
Then she fell asleep at school from inexplicable fatigue. Even walking proved difficult, often impossible, as she knocked into furniture and walls. It was like an electrical switch in her body toggled without warning. Some days she was in control, most she was not.
Specialists were stumped. Some wondered if 10-year-old Violet O’Dell exaggerated her symptoms for attention. A teacher warned that it was adolescent rebellion.
“How much would you pay to have extra time with your dying child? We don’t make a lot of money. We knew we’d lose our home, everything we own.”
In the fall of 2011, a cancer physician at Seattle Children’s hospital met with Violet. He crouched, to talk eye to eye. And he told her: The rare, inoperable malignancy struck just a few hundred children each year. Most died within a year. None survived.
But doctors could offer this: An “orphan drug” — one approved for a rare disease — might slow the cancer’s growth. With the drug, Avastin, Violet might live an extra month, maybe longer.
The drug cost up to $50, 000.
“How much would you pay to have extra time with your dying child?” Violet’s mother, Jessica O’Dell, asks. “We don’t make a lot of money. We knew we’d lose our home, everything we own.”
For the O’Dell family, the drug’s cost exceeded their annual income. For Genentech, the San Francisco-based company that manufactures Avastin, the drug brings in $3 billion a year.
The O’Dells’ conundrum — a lot of money for a little time — highlights the pharmaceutical industry’s unchecked profiteering from rare diseases.
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Pfizer recently said it's exiting the development of drugs for common conditions like heart disease. This is part of a shift underway in the pharmaceutical industry to give up on routine medical problems in favor of discovering "specialty" drugs for rare diseases and unmet medical needs like cancer.
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Treatment is being developed and sometimes the drugs shelf-life (flu vaccines). The only truely costly ones are for very rare diseases. They have little market value. The more prevelant an illness the easier to recoup costs and to make a huge profit.
"since people are buying and, literally, eating this stuff up anyway. And, of ALL their drugs, the psyche drugs are the MAJOR class, and growing by leaps and bounds". Mental illness is considered a chronic condition unlike a bacterial infection where 7-10days of a medication will usually cure the infection.
Rarely, once prescribed, are psychiatric drugs discontinued
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