Patients — the real stakeholders in global health

The response from Durhane Wong-Rieger of the Consumer Advocare Network to Robert Weissman’s article ’Big Pharma Digs In’ really hits home.  If patients aren’t the key stakeholder in global health issues, then who is?

Comment by Durhane Wong Rieger:

Patients are the only stakeholders with a “life and death” stake in the WHO”s negotiations to meet needs of patients in poor countries. So why have patients been excluded from discussions?

Patients were trolling the hallways at the WHO Working Group, trying to grab any delegate who would listen. In contrast, well-funded lobbyists that will benefit from the WHO proposal had open access to all member delegates.

Now, some vested interests are alleging that patient groups act on behalf of the pharmaceutical industry. The damming and false allegations made by Robert Weissman show clearly these lobbyists are out of touch with real patient groups.

I volunteer with the Canadian Organization for Rare Disorders and the Consumer Advocare Network, both named as receiving pharmaceutical funding. Mr. Weissman should know most of our contributions come from patient families. Our volunteers contribute hundreds of hours of information, support and advocacy. We have no paid staff and grateful for the small amounts from industry, including pharmaceutical.  Some of the “so-called” Big Pharma linked to CORD are small biotech firms that contribute about $1,000.

Patients support incentive-based R&D efforts of any industry, big or small. We support intellectual property rights because it generates investments for new product research. We support purchasing mechanisms.

Some of our interests coincide with those of pharmaceutical companies. Some do not.

We speak on behalf of patients and no one else. No one else, including Essential Access and Knowledge Ecology International, can make that claim.

http://www.huffingtonpost.com/robert-weissman/big-pharma-digs-in_b_99666.html