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Representative Darin LaHood

Representing the 18th District of Illinois

LaHood, Bipartisan, Bicameral Group Introduce Legislation to Improve Hemophilia Patients’ Access to Health Care

February 27, 2020
Press Release
Critical clotting factor therapies can exceed $10,000 per day

WASHINGTON, D.C. – U.S. Representatives Darin LaHood (R-IL), Brian Higgins (D-NY), Gus Bilirakis (R-FL), and Debbie Dingell (D-MI), and U.S. Senators Bob Menendez (D-NJ), Mike Enzi (R-WY), and Sheldon Whitehouse (D-RI) today introduced H.R. 5952, the Hemophilia Skilled Nursing Facilities Access Act, bipartisan, bicameral legislation to improve access to critical health care services provided through Skilled Nursing Facilities (SNF) for individuals with hemophilia. Currently, Medicare patients with bleeding disorder are frequently denied access to clotting factor therapies– which can exceed $10,000 a day --because of the program’s per-diem reimbursement rates. The legislation would add treatments for hemophilia to the list of services paid for by Medicare. 

“I am proud to join this bicameral, bipartisan group to introduce legislation to expand access to care for Illinoisans suffering from hemophilia and related bleeding disorders,” said Congressman LaHood. “Our bill will help those who suffer from bleeding disorders and face access challenges to skilled nursing care by strengthening Medicare coverage so SNF’s have the necessary resources to address the unique health needs of their patients. I look forward to working with this group to get our Hemophilia SNF Access Act signed into law and improve access to quality health care in Central Illinois.”

“The Bleeding and Clotting Disorders Institute (BCDI), the only federally funded Hemophilia Treatment Center in Illinois outside of Chicago, would like to thank Congressman Darin LaHood for championing this piece of legislation that, if passed, will significantly improve access to care for patients with hemophilia throughout Central Illinois. By allowing the cost of blood clotting factor to be reimbursed separately, patients will now have access to skilled nursing facilities, decreasing their overall length of hospitalizations and cost of care for the nearly 200 hemophilia patients we serve throughout Illinois. We are extremely fortunate to have Congressman LaHood advocating for our patients in Washington D.C. and express our sincere gratitude to him and the other bi-partisan and bicameral sponsors of this legislation,” said BCDI CEO/CMO Dr. Michael Tarantino, MD and COO/CFO Becky Burns.

There are almost 15,500 SNFs across the U.S. –including over 700 in Illinois– that provide short-term, intensive, inpatient rehabilitation services to more than 1.35 million people who no longer need to be in a hospital setting but still require health care services.

National groups representing hemophilia and bleeding disorders, including the National Hemophilia Foundation, the Coalition for Hemophilia, the Hemophilia Alliance, and the Hemophilia Federation of America have all endorsed the Hemophilia SNF Access Act. The group sent a letter to Congress urging the importance of passing this legislation saying, “This critical legislation will address the existing barriers to accessing skilled nursing facility (SNF) care for the bleeding disorder patient community.” You can read the letter here.

“Every person who suffers from a bleeding disorder must have access to care in a setting that is medically appropriate. Currently, Medicare beneficiaries who suffer from hemophilia or other bleeding disorders are often denied care from skilled nursing facilities,” said Congresswoman Dingell. “By strengthening Medicare coverage to address this need, we can help thousands who suffer from bleeding disorders and ensure they have access to facilities to properly provide the care they need when they need it.”

“Improving patients’ access to quality care is an important priority of mine. As co-Chairman of the Congressional Caucus to Cure Blood Cancers and Other Blood Disorders and co-Chairman of the Rare Disease Caucus I have had the opportunity to speak with many hemophiliac patients about their unique healthcare challenges. Our legislation is critical for these patients, as it will ensure they receive the proper level of care they need and deserve,” said Congressman Bilirakis. 

Congressman Higgins said, “Hemophilia patients on Medicare deserve an equal opportunity to access the rehab services Skilled Nursing Facilities can provide, but today too many are turned away simply because of cost.  This bill removes the barriers to care by covering under Medicare clotting factor therapies necessary for patients with bleeding disorders, much like chemotherapy is covered for patients with cancer.”  

“Medicare patients with bleeding disorders shouldn’t have to worry about care after hospitalization,” said Sen. Menendez. “This bill will give these patients the peace of mind of knowing they’ll get the care they need, when they need it, and in the most medically appropriate setting, regardless of the per-diem reimbursement rates.”

“Medicare patients with hemophilia and other bleeding disorders require specialized treatments to recover after being hospitalized, but they currently face challenges when they try to receive this critical care,” said Sen. Enzi. “By changing the payment structure for these important treatments, we can help make sure these patients have access to the care they need.”

“It's not right that patients in need of care at a skilled nursing facility could be turned away because of Medicare reimbursement rules,” said Sen. Whitehouse.  “I’m glad to cosponsor this legislation to allow Medicare patients suffering from bleeding disorders to get the care they need to get healthy.”

“Access to skilled nursing facilities is critical for Medicare beneficiaries with bleeding disorders and we have been advocating to improve access for many years,” said Michelle Rice, Chief External Affairs Officer for the National Hemophilia Foundation. “NHF applauds Senators Menendez, Enzi, Whitehouse, and Representatives Dingell, LaHood, Higgins, and Bilirakis for their leadership in introducing this legislation that will improve care for hundreds of people with bleeding disorders in the US – and remove some of the strain on taxpayers.”

The full text of the bill can be found here

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