[Ip-health] Re: Three letters to NYT on high co-payments article

[Joana Ramos]

Jamie,

Thanks for sharing these letters on the list.  The context behind each
of the respective letters is important too.  For example.  the letter
from Hildy Dillon of the Leukemia and Lymphoma Society (LLS)  speaks
only of  skyrocketing co-payments making innovative drugs like Gleevec
become more & more out of reach for patients.  Nary a word about the
need to control the price of these drugs in the first  place.

In the case of Gleevec, as you have documented so well previously, the
worsening access issue is made even more ironic by the fact that most of
the initial development of this drug was taxpayer-funded through NIH
grants. And its Orphan Drug status gave Novartis a 50% rebate on
clinical trial costs.

But here in the US, and increasingly worldwide,  most disease
organizations and patient groups alike never speak out about drug
pricing. One of the main reasons is apparently because most of them are
supported financially by the drug companies.  LLS is known for being
among the few major cancer  NGOs that offer some limited  direct patient
financial aid and more recently, a co-pay assistance program,  which
obviously helps individual patients in the here & now. LLS also has a
major focus on funding research . But whenever I get  educationally
materials or CME announcements from them, as well as from all the other
major players in the field,  the offerings all highlight their pharma
sponsorship.  Now that  industry sponsorship has become the norm, along
with industry-created educational and advocacy organizations, few groups
may be willing to  bite the hand that feeds them. Big Pharma has done
its homework very well in building "alliances" with patients and patient
groups.

Time for the NGO sector too to take back its own educational work.


Joana Ramos, MSW
Cancer Resources & Advocacy
Seattle WA USA
+1-206-229-2420
http://ramoslink.info/
www.bmtbasics.org
www.healthyskepticism.org