Hundreds of activists recently descended on our nation's capital to demand more federal funding for lupus research.
But for many living with this autoimmune disease - including more than 100,000 Floridians - the most immediate threat isn't a dearth of new treatments, but losing access to the ones that already exist.
By creating a powerful new health policy board, the Affordable Care Act (ACA) has paved the way for dramatic cuts to Medicare.
Without swift action from Congress to eliminate this budget-cutting body, countless seniors will be cut off from care and the health of Medicare patients with chronic diseases, including lupus, will suffer.
Lupus is an autoimmune disease that can manifest itself in many parts of the body, including the joints, blood and kidneys.
Antibodies attack healthy tissue, causing severe pain and lasting damage.
Fortunately, in most instances, lupus isn't fatal. In fact, many of those afflicted by the disease are able to live into old age. But, as with many chronic illnesses, successfully managing lupus requires regular treatment and close monitoring by medical professionals.
The Independent Payment Advisory Board (IPAB) established by the ACA could compromise access to necessary doctors and medications.
The new law gives IPAB's 15 unelected members the authority to cut Medicare spending if the program grows too rapidly.
To ensure that these cuts are enacted quickly, IPAB's recommendations are exempt from any administrative or judicial oversight.
Even Congress is limited in its power to oppose the board's reforms. Blocking an IPAB recommendation requires a three-fifths majority vote in the Senate.
And because of the way the law is written, the cuts IPAB is most likely to propose are the most dangerous to Medicare patients. IPAB has little choice but to slash Medicare reimbursements to doctors.
Cuts of this sort could be disastrous here in Florida, where low Medicare payment rates have put enormous strain on health care providers.
Just this June, Sacred Heart Hospital in Miramar Beach cited inadequate federal reimbursements as the main reason for its recent employee layoffs.
And according to the American Medical Association (AMA), 17 percent of all doctors and 31 percent of primary care physicians are already refusing new Medicare patients because of low reimbursement payments.
IPAB could quickly spark a mass exodus of doctors from the program, leaving Florida's more than 3.5 million Medicare seniors scrambling to find satisfactory care.
And in the Sunshine State, where Medicare beneficiaries suffer from some of the highest chronic-disease rates in the United States, restricted access to medicines will be especially painful.
Many argue that IPAB is necessary to address Medicare's growing costs. But IPAB isn't likely to make Medicare more financially sustainable.
According to a recent report from the nonpartisan Kaiser Family Foundation, the new board "may discourage the type of longer-term policy changes that could be most important for Medicare and the underlying growth in health care costs."
Fortunately, the IPAB-repeal effort is gaining momentum. Numerous groups, including the AMA, the U.S. Chamber of Commerce, and the American Association of Neurological Surgeons, have voiced opposition to the board.
More encouraging still, a growing number of lawmakers from both parties are fighting for the "Protecting Seniors' Access to Medicare Act," a bill that would completely eliminate IPAB.
Those who suffer from chronic diseases such as lupus already face enough challenges.
The last thing these patients need is a group of unelected federal officials restricting their medical access.
Rick McCollum is president and CEO of Lupus Foundation of Florida Inc., based in St. Petersburg.