Great news that the awesome exhibit, Out From Under, will now be a permanent feature of the New Canadian Museum for Human Rights. I visited the exhibit with the curators in 2008 at the ROM in Toronto, and it was a great experience. Congratulations, Catherine, Melanie, and Kathryn.
This is the first of three panel discussions at the Future Past: Disability, Eugenics, and Brave New Worlds symposium hosted by the Paul K. Longmore Institute on Disability at San Francisco State University. This panel covers the WHAT? giving an overview of the symposium’s focus: the history of eugenics movements in North America, and why they are disturbingly relevant today.
Presenters: Alexandra Minna Stern, Marcy Darnovsky, Glenn Sinclair, Nicola Fairbrother
If you are interested in watching more panels from this symposium, please visit:
Cancer drug shortages in the United States are putting lives at risk, especially when treatments require regular dosages over extended periods of time. Alice Park of Time Magazine writes:
In late February, when Divers called the hospital to confirm Alyssa’s upcoming chemotherapy treatment, the nurse informed her that there was a drug shortage. The hospital couldn’t be sure that there would be enough methotrexate — the cornerstone of therapy for some childhood cancers, including leukemia and osteosarcoma — to treat Alyssa, now 10. Divers was told she might have to reschedule the session; the hospital would let her know. “It made me sick to my stomach to hear that,” says Divers, a former chaplain from Palmyra, Va. “Alyssa was in treatment for over a year already, and the last thing you want to do is add unnecessary delays in treatment, which gives the cancer a chance to catch up.” Divers explains that her daughter’s cancer doubles in tumor load every 34 days, “so you need to hit it again and again to eradicate it.” (See article)
And this is just one of the many cases. But what is causing these shortages? Although this is not the whole story (since the big picture is a bit more complicated, including procedural issues with FDA inspections), a substantial portion of the problem is caused by the economics of drug supply. One thread of the economic story goes something like this: in order to make chemotherapy treatments easier for patients, doctors began offering infusions in their offices rather than in hospitals. The 2005 reimbursement scheme, however, allowed doctors to be reimbursed at a 6% profit. The problem was that the reimbursement price lagged behind the market prices by six months, which made the reimbursements lower than what the doctors paid for the drug, essentially pushing some physicians to prescribe pricier brand name drugs. This, in turn, amounted in lower orders of generic drugs, which further shrank the market.
“In order to gain market share, companies underbid the market to get the business, and it’s a race to the bottom,” says Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. “Whoever is the last company standing can’t charge enough to make a profit on the drug and to make needed investments to keep making the drug.” That’s what may have happened with the methotrexate that Alyssa Divers depends on. (See article)
To add to this incredible situation, once the drug shortages were publicized, doctors started receiving offers from distributors, with stockpiled stashes of the harder to get drugs, who were very happy to sell the medicines, charging “$800 to $900 per gram for a medication that normally costs $16” (see article).
I guess that one way to respond to this is to blame the government for its untimely reimbursement policy, which certainly makes me wonder (why is there a six month lag in the first place?). What really puts a bad taste in my mouth, however, is how intimately the production of pharmaceuticals is linked to the administration of treatments that use certain drugs. When a profession views itself as essentially helping humankind by caring for human well being and health and when the societal respect is accorded to this profession for such reasons, it is more than disheartening to find out how closely some such professionals can resemble mere pedlars of life when viewed in light of their business connections to pharmaceutical companies (which seem to have no moral qualms about charging 56 times the market worth of a life-saving medicine).
The WG article makes the divide between proponents and opponents look far smaller than reality to make the controversy itself look far less grave than it actually is.
It notes at the beginning of the article that the group members share the views about profound disabilities as below.
1) They are concerned that people with profound disabilities are devalued.
2) They believe more investment in medical and social services is priority.
3) They think societal attitudes toward people with profound disabilities should be improved.
4) They also think that parents of profoundly disabled children should be “afforded respect and considerable deference in making the complex and difficult decisions unique to their child’s care.”
They can’t share the first three views, because opponents’ point is that the rationale of growth attenuation is incompatible with these concerns. Its rationale discriminates and devalues children with profound disabilities. Continue reading
Today is World AIDS Day and a good time to reflect on many advances, or is it? National Post Journalist, Jonathan Kay presents interesting details about International as well as Canadian homphobic politics in this article, dated November 22, 2010. Apparently “killing someone because they’re gay just isn’t that bad.”
No one expects Saudi Arabia, Cuba and Liberia to start printing gay-marriage licenses any time soon. But would it be too much to ask that these countries at least oppose the targeted murder of homosexuals?
from CBC Edmonton, last night, with stacks of comments already.
In his third anniversary update of January 13, Ashley’s father writes “About dozen parents all over the world who are successful at providing the treatment to their Pillow Angels (boys and girls) are in contact with us.” He also mentions an email from “an attending doctor of a panel on Growth Attenuation at the pediatric conference held in Hawaii in May 2008” that says “when we asked for a show of hands, about half of the room said they had been approached by a family seeking growth attenuation, and about a dozen raised their hands when asked if they had offered it to a family.”
Claire wrote a great post here about this shocking revelation, pointing out that the growth attenuation is being justified for children with far lighter disabilities than Ashley’s for caregivers’ convenience. I appreciate what she has been writing on this issue. I agree with her 100% and share her sorrow at this new information.
Here, I would like to raise a question. Who is “ an attending doctor” who sent the email and reported to Ashley’s father about how the conference had gone?
The American Academy of Pediatrics had an annual meeting in Hawaii May 3-6, 2008. I found the program of May 4 here. The program 4195 titled “The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental Disability” seems to be the panel mentioned by Ashley’s father. Continue reading