Ideas for Change: A Registry of Registries

Well, we may be a few days late in sharing this with you, but it’s time to celebrate nonetheless. held a contest, in which 25 million+ It is time to care about rare disease ranked in at the top 10 of more than 2,505 ideas, which as a result of more than 209,000 votes will be pitched to members of the  Obama Administration.
Ideas for Change in America is a crowd-sourcing competition that empowers citizens to identify and build momentum around a diverse range of ideas for addressing the challenges our country faces.

After 2505 ideas and 209,950 votes were submitted, the 2010 competition concluded on March 12. The 10 most popular ideas are listed to the left, and will be presented to relevant members of the Obama Administration and form the basis of national campaigns dedicated to advancing each idea.


The rare disease patient is the orphan of health care systems.

There are close to 30 million people in the USA with rare diseases (a disease affecting fewer than 200,000 people).  There are close to 100 million caregivers for the millions of kids and grown-ups who have rare diseases.  There are close to 7000 rare diseases.  For more than 15 million people with rare diseases there is no treatment for their disease.  Research is scarce.  Many many people have no support group or foundation fighting for them.

It is time to make rare disease a priority.  The rare disease community needs a registry of registries – a registry that would include information on many rare diseases.  Anonymous (“de-identified”) information could be searched (“queried”) for disease pathways, disease targets, effective treatments, overlapping health issues, etc.

The time is now for better treatments and cure through a big silo-busting knowledge share — for rare.

We caught up with Catherine Calhoun who submitted this fantastic idea (and who has an adorable dog)… she had this to say: “With the help of, I think we could really be close to the tipping point on rare disease awareness which will build more support for our community and push drug development for treatments and cure – I want to save and improve millions of lives (it’s not just about my son Billy for me, it’s about everyone I can possibly help).”

Meanwhile, back in Congress:
The bad news is that the health reform reconciliation bill under consideration this weekend will not cover orphan drugs:
Section 340B of the Public Health Service Act (42 6 U.S.C. 256b), as amended by sections 7101 and 7102 of the Patient Protection and Affordable Care Act, is amended—
e) EXCLUSION OF ORPHAN DRUGS FOR CERTAIN COVERED ENTITIES.—For covered entities described in subparagraph (M), (N), or (O) of subsection (a)(4), the term ‘covered outpatient drug’ shall not include a drug designated by the Secretary under section 526 of the Federal Food, Drug, and Cosmetic Act for a rare disease or condition.’’.
However, we at MarbleRoad still support health reform as it cuts deficit by $1.3 trillion over 20 years, covers 95% of Americans.  The bill increases the tax credits for middle-income families who buy insurance, and reduces the penalty for not buying insurance from $750 to $695. It closes the gap in Medicare prescription drug coverage by 2011 and gives seniors who fall into the gap this year a $250 rebate. Moreover, the bill covers 100% of the increased Medicaid costs of all states until 2016 and decreases each year thereafter, and requires that doctors that care for Medicaid patients be reimbursed at the full rate. Read the bill here.

~ by marbleroad on March 19, 2010.

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