Jul. 19, 2017

BREAKING NEWS: Update on Lupus Funding and Health Care Reform

For the second time since the Lupus Foundation of America’s National Policy Summit was held June 26-27, the House Appropriations Committee today approved funding for critical lupus programs, as the Committee voted to provide $6 million to continue funding for the National Lupus Registry at the Centers for Disease Control (CDC) and Prevention and $2 million for the National Health Education Lupus Program at the Office of Minority Health (OMH).   Moreover, the Committee voted to provide $35.2 billion for the National Institutes of Health, a more than $1 billion increase for the single largest funding source for lupus research.

The Committee’s action is a significant victory considering the President’s budget request to Congress proposed to eliminate both lupus programs and cut NIH funding by $6 billion. It also demonstrates the power of lupus advocates as these funding requests were top priorities during the meetings that lupus activists held with more than 200 Members of Congress during last month’s Policy Summit.

Importantly, the bill approved by the Committee includes “report” language that provides guidance on how CDC and OMH should utilize the funding.  Specifically, the bill encourages CDC to develop lupus self-management programs to improve quality of life and to study pediatric lupus and the burden of the disease in children.  The bill also directs OMH to work with the lupus community to expand the development of tools in order to increase minority participation in clinic trials.

The bill now heads to the full House of Representatives for a vote and the Senate still must act on its version of the legislation.   However, if enacted into law, the bill would bring total funding for the registry to $56 million and more than $14 million for the lupus program at OMH.

Thank you to the thousands of lupus activists whose advocacy during the Policy Summit and throughout the year has helped to make these victories possible!  We still have more work to do so please keep an eye out for our advocacy alerts and updates.

Senate Action on Health Reform
During last month’s Policy Summit, lupus activists urged Congress to support health care reform that ensures people with lupus have access to affordable and quality care.  Thanks to our outreach and the outreach of others from throughout the health care community, it appears that the U.S. Senate does not have the votes to pass the Better Care Reconciliation Act (BCRA), a bill that would increase the cost of coverage, eliminate essential patient protections, cut Medicaid and result in millions of Americans losing their health insurance.  However, it’s still possible that as soon as next week, the Senate may vote on a modified BCRA or to repeal the Affordable Care Act (“Obamacare”) and replace it with a new health reform plan at a later date.

Therefore, the Foundation continues to work to make sure that any health care legislation passed by Congress will:

Ban pre-existing condition exclusions and caps on insurance coverage;
Preserve access to Medicaid and affordable, quality care; and
Require coverage for essential benefits and ensure access to providers experienced in diagnosing and treating lupus.
While the next steps in the health reform debate are unclear, it is clear that your advocacy and the advocacy of thousands of others across the country have forced Congress to revisit these vital issues.  We will keep you updated and let you know when your outreach to Congress can make the most difference on this issue, which is critical to ensuring that people living with lupus have access to the care they need, when and where they need it.

Thank you again for your tremendous efforts in the fight against lupus!


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