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Congressman Brian Higgins meets with members of the National Hemophilia Foundation.
Congressman Brian Higgins meets with members of the National Hemophilia Foundation.

Bipartisan, bicameral legislation aims to improve hemophilia patients' access to health care


Fri, Feb 28th 2020 11:25 am

Critical clotting factor therapies can exceed $10,000 per day

U.S. Sens. Bob Menendez (D-N.J.), Mike Enzi (R-Wyo.) and Sheldon Whitehouse (D-R.I.), working alongside U.S. Reps. Debbie Dingell (D-MI-12), Darin LaHood (R-IL-18), Brian Higgins (D-NY-26) and Gus Bilirakis (R-FL-12), introduced 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 the 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.

“Medicare patients with bleeding disorders shouldn’t have to worry about care after hospitalization,” Menendez said. “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,” Enzi said. “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,” Whitehouse said. “I’m glad to cosponsor this legislation to allow Medicare patients suffering from bleeding disorders to get the care they need to get healthy.”

“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,” Dingell said. “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.”

“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,” LaHood said. “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.”

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.”

Bilirakis said, “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 health care challenges. Our legislation is critical for these patients, as it will ensure they receive the proper level of care they need and deserve.”

There are almost 15,500 SNFs across the U.S. 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.

The Hemophilia Skilled Nursing Facilities Access Act is supported by the Coalition for Hemophilia B, the Committee of Ten Thousand, Hemophilia Alliance, Hemophilia Federation of America and the National Hemophilia Foundations.

“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 Sens. Menendez, Enzi, Whitehouse and Reps. 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 U.S. – and remove some of the strain on taxpayers.”

“Adding clotting factor therapies to the list of services excluded from the skilled nursing facility per diem will give patients with bleeding disorders in New Jersey, and across the country, access to the care they need,” said Stephanie Lapidow, executive director of the Hemophilia Association of New Jersey. “We are grateful for Sen. Menendez’s support in advocating for these patients, and helping to ensure that their recovery can be facilitated and complications can be adequately managed following surgery.”

The full text of the bill can be found here.

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