Hemophilia Organizations Oppose Senate’s Obamacare Replacement Legislation

Organizations championing patients with hemophilia and other bleeding disorders have formed a united front to oppose the Better Care Reconciliation Act, the Obamacare replacement legislation that the groups contend will damage the hemophilia community.

The National Hemophilia Foundation, Hemophilia Federation of America, Coalition for Hemophilia B and Hemophilia Alliance are urging the full Senate to reject the draft. The Republican Party controls the Senate, and its leaders spearheaded the creation of the legislation, which they want to replace former President Barack Obama’s Affordable Care Act. The full Senate must pass it, and although many senators have expressed opposition to it, nothing is certain in congressional legislation battles.

People with hemophilia and other bleeding disorders require expensive medication and specialized care that would suffer significant hits if Congress eliminates the comprehensive insurance that covers treatment. And the draft of the bill would do that.

Specifically, hemophilia organizations oppose the legislation because:

• It would eliminate the health coverage of 15 million Americans by 2018. Provisions that would make it more difficult for Americans to obtain healthcare-related tax credits and that would repeal shared payments would put coverage out of reach for many low- and middle-income Americans, the organizations say.
• It would mean that people who are able to maintain their insurance coverage would pay more for less coverage than they have now. The bill proposes increases in patients’ insurance premiums, deductibles and out-of-pocket costs. Another way the bill would hurt coverage is eliminating what is known as essential health benefits, or EHBs, which assure that patients receive minimum coverage benefits.
• It threatens several other facets of coverage that help hemophilia patients. These include fully funded state Medicaid programs, EHBs that feature robust drug benefits, protection from high out-of-pocket patient costs and patients’ access to affordable coverage. Medicaid coverage is for poorer and disabled Americans.

“The Senate must maintain the ban on lifetime and annual limits [of coverage for a disease], which is a life-saving policy for people with bleeding disorders,” Val Bias, the National Hemophilia Foundation’s chief executive officer, said in a press release. “Allowing states to define the essential health benefits will allow these caps [maximum coverage amounts] to return, which harms not only our patient community, but other people with acute and chronic medical conditions.”

The legislation’s “drastic cuts to Medicaid would devastate the most vulnerable members of our community,” said Kimberly Haugstad, the foundation’s president and chief executive officer. “It’s estimated that some 30 percent of the bleeding disorders community rely on health coverage through Medicaid.” The bill’s proposals “to phase out the Medicaid expansion, cap federal Medicaid spending, and index future increases to an unreasonably low metric of inflation would be ruinous for people with bleeding disorders and other chronic conditions,” she added.

“As the organization that represents hemophilia treatment centers, we know how vital comprehensive insurance coverage is to the bleeding disorders community,” said Joe Pugliese, the president of the Hemophilia Alliance. “We don’t want any of our patients to lose coverage. We will continue our work with Congress on policies that protect our vulnerable patient population.”