COTT: Working to keep us safe

I just received another issue of the COTT Washington Update, Vol. 11 No. 1. It’s one of the most intelligent reads you can get in the hemophilia community. COTT is the Committee of Ten Thousand, a national nonprofit that was formed in response to the HIV infections of the 80s. It helped to bring closure and settlement to the community affected by HIV. But its work wasn’t done then; it has since become our nation’s watchdog for the blood supply.

Below is just a quick sample of what’s in the Update. Note the scope of topics, the relevance to hemophilia, the timeliness of it:

1. …the unexpected withdrawal of Tom Daschle, the White House candidate for Secretary of Health and Human Services, [was a setback to health reform] who was to have also directed the Office on Health Care Reform in the White House.

2. The current economic stimulus bill drafted by the House Democratic majority includes an $80 billion for Medicaid, the same for education, and smaller amounts for unemployment insurance, COBRA costs, law enforcement, military construction and homeland security.

3. A disturbing part of the Stimulus bill language was proposed, in a section supporting outcomes- or evidence-based medical research, being called ‘comparative effectiveness’ when applied to pharmaceuticals, biologics, and medical devices. The language allowed government bodies such as the National Institutes of Health to convene expert panels to review results of such studies, and in effect endorse the winners – only those most effective – with dire ramifications for others. The problem is that cost is factored into such rankings, and while as we know new products from fractionators increase safety, they may not currently reflect improvements in cost-effectiveness. Moreover, should a panel select one brand of factor over others, there is no built-in assurance as yet that the need for all factor products to be available to all patients would be guaranteed. Alerted to this by the fractionators’ association, PPTA, COTT and others wrote to relevant committee chairs in the Senate to soften this language.

4. Vermont: The Health Department office operating the Medicaid program in Vermont contracted for hemophilia pharmacy effective November 1. Although the regional and national associations were not aware of this plan until less than a week before, HTCs in the state were contacted in advance. The regional association convened a number of input conference calls, and COTT as well as others urged that the MASAC-approved Standards of Service document be shared with that office, and that Vermont be asked to respond whether its terms were met in the contract.

5. New York: The state Medicaid office has announced contracts for hemophilia pharmacy – multiple contracts, so concern about the sole sourcing actions in other states is not present, however the process exempts 340b HTCs (Hemophilia Treatment Centers which sell factor). Thus, those currently using one of the state’s centers can continue there; those in more rural areas must however subscribe to one or the other of the state’s new contractors, regardless of whatever more hemophilia-focused pharmacies they have been using.

6. The Advisory Committee on Blood Safety and Availability met in December. The only topic of discussion was “The Responsibility of Blood and Plasma Centers to Donor and Public Health.” In COTT testimony we pointed out that conspicuously omitted from these concerns was recipient health… perhaps because the blood banking community has no direct contact with recipients but can track and work to improve care provided to, and health of, their donors.

7. Wellpoint has continued to expand the number of states in which its for-profit subsidiary payers (Blue Cross) require clients with hemophilia to use either an HTC or its own mail-order pharmacy in Indiana; the total now stands at 10 of their 14 states.

This is just a sample of the breathtaking information and vast scope of COTT’s activities. The volunteers and committee members work hard to stay on top of anything related to blood safety. While many in the community use recombinant products and think this doesn’t apply to them, COTT also monitors all activities regarding hemophilia business, such as the narrowing of choice, forced homecare switching, and research.

This summer marks COTT’s 20th year. It’s planning the construction of an AIDS/Hemophilia memorial, and the celebration of COTT’s 20th Anniversary this summer with an event in Washington.

COTT writes: “Out of the ashes of the devastation of 10,000 lives emerged a grassroots advocacy group that has brought the hemophilia community a federal advisory committee now in its 12th year, a $600 million relief bill, and plans for a national blood policy, maximizing blood safety well into the 21st century.”

Please subscribe to this important newsletter, for your child’s future and current health safety.

www.cott1.org