Stealth Lobbying: Drugmakers Behind Push For Canada To Pay For AIDS Drugs
3 CommentsBy Ed Silverman // May 28th, 2007 // 10:52 am
Louise Binder is HIV-positive, and also suffers from Tin Ear Syndrome.
Binder, you see, is chairwoman of a coalition that fights for drug-policy reform in Canada. And during a recent visit to Ottawa, the nation’s capital, she urged Parliament to rewrite rules governing prescription drugs that would increase the access patients have to new, expensive meds and require the government to foot the bill.
One thing she didn’t mention during her visit - her association, the Best Medicines Coalition, receives 100 per cent of its funding from Canada’s drugmakers, which stand to profit most from a governmental decision to approve new and expensive meds for use and coverage in Canada.
Critics say such groups are conflicted and behaving badly by not properly disclosing the links. “Here they are representing exactly the same positions as big pharma,” Steve Fletcher, a conservative MP and parliamentary secretary to the health minister, tells The Financial Post. “If they disclosed that at the onset, that would’ve been much better than disclosing it once they were asked.”
During her recent visit to Parliament, Fletcher asked Binder pointed questions about her group’s funding and potential conflict of interest. She told the health committee her group receives half its funding from Health Canada, and half from the drug industry, but couldn’t name which companies provided money, adding that some comes from Canada’s drug industry trade group.
In an interview with the Post, Binder argued she isn’t a parrot and relies on industry funding because the government doesn’t provide any. Yet she acknowledged the group actually receives 100 per cent of its $250,000 operating budget from the pharmaceutical industry. Although it received half its funding from Health Canada last year, it was an anomaly, in the form of a grant for a research project.
Fletcher called that omission “disgusting.”
Click here for the full article.
BJ
There is a long-standing tradition of Pharma giving AIDS Service Organizations (ASO’s) money through Unrestricted Educational Grants. Any one who has worked in Pharma, or community health is aware of this and the ethical-legal dance that ensues. Here in the US, Pharma has to disclose their funding to groups, and they are smart enough not to mix ASO’s with lobbying.
The reality is that the cost of HIV care is so high that very few individuals patients can afford these life sustaining medications without some government assistance. In the US alone more than 60% of HIV positive Medicare patients receive government assistance in paying for their medications. ADAP, the AIDS Drug Assistance Program, provides low cost or free medications for 142,000 HIV positive Americans at a cost of $1.4 billion (2006). As of March 2007 there were 571 people on waiting lists in Montana, Alaska, South Carolina and Puerto Rico.
In closing, if we are going to provide HIV medications for the developing world, we should at least take care of our own citizens as well.
Ed Silverman
Hi BJ,
You make a good point, and it’s well taken.
I think the issue raised in this item is the need for transparency. A failure to fully disclose a connection, like it or not, prompts questions about the interests being served. Better to be forthcoming - lay one’s cards on the table, as they say - than to raise doubts or suspicions.
Thanks for writing,
Ed S
Joana
BJ,
Can you tell us more about your comment that:
>>Here in the US, Pharma has to disclose their funding to groups,….
From my own work as a community organization specialist, and now for several years using this background in work on improving access to care for cancer and blood diseases, one issue I have always encountered is that while charitable organizations — those with 501(c)3 status– are required to dislcose on their Form 990 the number of donations that they receive if $2000 or more, and the amounts of each donation but they do NOT have to disclose from whence the donations came, although some choose to do so. Likewise, donors have to report their donations in order to get the tax exemption, but they do not have to disclose to whom they donate, although some of them do.
It is my understanding that only the UK requiries charities to disclose exact sources and amounts of funding, and this requirement has only been in effect for a year or so.
Certainly we do need this kind of transparency here.
Re: HIV/AIDS drugs, the pharmas certainly do advertise their products heavily to the public in both HIV-realted venues and to the general community, as they do for all drugs. The ultimate solution is get beyond the status quo where we have special access programs for specific diseases, ( which of course can help in the here & now, as do the industry patient assistance programs) but which ends up pitting disease groups against each other, when we need to be uniting to achieve universal access. The moneys being spent on promotion should be rolled in to lowereing prices.
Another insidious side of pharma-sponsorships is that patients and patient groups end up beseeching insurers and/or governments to provide them with the needed medicines, but rarely here in the US do we see patients demanding that the government control the obscene prices we are being charged. The pharmas thus get a very effective “lobby group” to do what they cannot. It’s time for a change….
–
Joana Ramos, MSW
Cancer Resources & Advocacy
Seattle WA USA
http://ramoslink.info/
http://www.cancersurvivorsproject.org
http://www.healthyskepticism.org