I'll add some more information further down about who I am and try to get more links.
Below is the letter I wrote to the editor of NYtimes, in regard to this article
Children’s Hospitals Lose Some Drug Discounts
by Robert Pear
"Under the new law, hundreds of rural hospitals became eligible for discounts for the first time, but the discounts are not available on orphan drugs, which account for a surprisingly large share of their outpatient pharmacy costs. At the same time, children’s hospitals lost access to discounts on the drugs."
". . . in revising the drug discount program as part of the new health care law, [Congress] blocked these hospitals from continuing to receive price cuts on orphan drugs intended for treatment of diseases affecting fewer than 200,000 people in the United States.
To the editor:
My "orphan disease", ovarian cancer, kills more than 15,000 American women each year. Though extremely rare, girls as young as nine have been diagnosed.
I’ve lived 10 years beyond my prognosis because I took drugs mentioned in your article: both Herceptin and Avastin. My drug companies were paid $4-5,000 per treatment for years: close to half a million dollars. They are now charging Americans up to $15,000 for Avastin per dose. Worldwide, these drugs are used to treat hundreds of thousands for colon and breast cancers. Their research and development costs were paid a long time ago, as well as enormous profits.
Both public and private health care are billed phony "discounted prices" that are actually outrageous, pumped up "retail prices" in addition to passing on 20% to the patient as co-insurance.
Whether it was a trade-off or an oversight, the Affordable Care Act needs to be fixed so no one dies because her disease is too uncommon to treat.
Sinecerly, slouch sock
In 1995 I was 42 years old, and very very sick when my ovarian cancer was diagnosed. I had been bloated, unable to eat, and in pain for over a month. I'd gone through a series of the wrong tests, endoscopy, colonoscopy, allergy tests, glucose tolerance tests. My gyn exam had indicated an enlarged ovary two years earlier, but no one followed up on that. I had been going to a doctor for over 4 years with symptoms, but I had no idea that they could be as serious as cancer, so I didn't press for more testing to rule out the common things.
Here's a link to our national organization, founded in 1998. they have all the information that I know, some of it coming to light only through the efforts of women solely through the efforts of survivors.
the symptoms that my doctor overlooked are detailed here.