The Bone Marrow Failure Disease Research and Treatment Act of 2009 is proposed legislation that would cost $8 million dollars annually  and increase the federal government’s commitment to researching and treating acquired bone marrow failure diseases. The legislation directs the Health and Human Services Department to develop a comprehensive strategy to combat these diseases which include:

•A national bone marrow failure disease registry so that researchers can combine their
data in one place, yielding more effective research designs and better results.

• Pilot studies through the Agency for Toxic Substances and Disease Registry to
determine which environmental factors cause people to acquire bone marrow failure
diseases.

•  Minority-focused programs to make information on treatment options and clinical trials
available to minority communities, particularly Hispanic and Asian American
communities.

• Agency for Healthcare Research and Quality grants to help improve diagnostic
practices and quality of care for patients with bone marrow failure diseases.

The above summary was provided by AAMDS.org, the bill was sponsored by Congresswoman Doris Matsui of California. Read the bill in it’s complete text here.

Healthcare is notorious for it’s lack of communication and unnecessary repetition that wastes both time and money—anything to streamline information and promote greater organization is a good idea. There are so many barriers between patients and care currently, spending $8 million a year to form all-inclusive data base alone would be worth it.

As someone whose bone marrow failed without a known cause, I like the idea of putting more time and money into researching why failure happens. If there are preventive measures to take, why not learn what they are?

The issues with donor numbers among ethnic minorities has been discussed here before. Without getting preachy, the hope is that everyone will be offered the same chance to find a cure out there, so let’s make it happen.

Here is the most recent list of those Representatives who have cosponsored this bill, mine isn’t on the list. Time to make a phone call.

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