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NHF Letter to the House of Representatives

March 23, 2017
NHF Letter to the House of Representatives

Today, the House of Representatives is expected to vote on the American Health Care Act (AHCA), legislation to repeal and replace the Affordable Care Act (ACA). NHF has sent a letter to every member of the House laying out our concerns regarding the legislation. NHF is closely monitoring Congressional actions on AHCA and will continue to advocate for insurance policies that meet the needs of the bleeding disorders community. We will update the community as the Congressional debate over the ACA continues.

Full text of letter to the House of Representatives


March 23, 2017

The Honorable Paul Ryan
Speaker of the House
United States House of Representatives
Washington, DC 20515

The Honorable Nancy Pelosi
Minority Leader
United States House of Representatives
Washington, DC 20515

Dear Speaker Ryan and Leader Pelosi,

As Congress prepares to vote on the American Health Care Act (AHCA), legislation to repeal and replace the Affordable Care Act (ACA), NHF wants to highlight provisions of critical importance to the bleeding disorders community. NHF is the nation’s leading advocacy organization working to ensure that individuals affected by hemophilia and related bleeding disorders have timely access to high quality medical care and services, regardless of financial circumstances or place of residence.

Background on Bleeding Disorders
Hemophilia is a rare, chronic bleeding disorder affecting approximately 20,000 people in the US, who infuse high-cost clotting factor therapies to replace missing or deficient blood proteins. These therapies are safer and more effective than ever, but are also very expensive. Drug costs for a person with severe hemophilia can be $250,000 a year or more. Developing an inhibitor (an immune response to treatment), complications such as HIV/AIDS, hepatitis and joint diseases, or bleeding as a result of trauma or surgery can increase those costs to $1 million. There are also similar bleeding disorders, like von Willebrand Disease, that affect up to 1 million Americans. The CDC estimates that 70% of people with bleeding disorders receive care at hemophilia treatment centers (HTCs), where a multi-disciplinary team of providers provide comprehensive, highly-specialized care to assess and treat bleeding disorders and its long-term complications.

Due to our extremely high costs and need to access highly-specialized care, our community must maintain adequate insurance to lead healthy, productive lives. This is why the Congressional debate over proposals to repeal and replace the ACA is so important for our community. We appreciate that a number of ACA policies would be maintained by the AHCA and wish to raise concern about some of its proposals that would harm our community. These policies are discussed in more detail below.

 Consumer Protections
As roughly 55% of our community is insured by private insurance plans, NHF supports the many private insurance consumer protections included in the ACA, which have benefited our community and others with high-cost, chronic and rare conditions. These policies include the elimination of pre-existing conditions exclusions and rating based on health status, coverage for dependents until age 26, and network adequacy policies to ensure access to specialists. We recognize and appreciate that the AHCA as currently drafted would maintain these important protections. We wish to highlight two policies that are particularly important to our community:

  •  Elimination of Lifetime and Annual Limits: This is a top priority for people living with bleeding disorders due to our high medical costs. Clotting factor therapies are very effective at preventing and treating life-threatening bleeding episodes, but also are extremely expensive. As a result of these high-cost treatments, people with bleeding disorders would regularly hit lifetime and annual limits, before the ACA was enacted. We recognize and appreciate that the prohibition of lifetime and annual caps would be maintained by the AHCA and ask that these policies be maintained throughout the legislative process.
  •  Essential Health Benefits: Likewise, we request that the federal definitions of the Essential Health Benefits (EHBs) be maintained. The current EHB policies ensure that plans cover a comprehensive set of services. Equally important, several ACA patient protections extend only to services defined as EHBs – including the elimination of lifetime and annual limits, limits on out-of-pocket expenses, and the requirement that plan benefit designs not be discriminatory – which requires a robust definition of EHBs so that these protections are meaningful. We recognize and appreciate that the EHB requirements are not repealed in the AHCA and ask that these policies be maintained throughout the legislative process.

Many individuals with bleeding disorders struggle to afford premiums for insurance coverage comprehensive enough to meet their complex health care needs and pay significant out-of-pocket expenses for treatment. We support all efforts to further improve the affordability of insurance. We support current ACA policies and potential future policies to address affordability, including:

  • Maintaining the Current Out-Of-Pocket Maximum: The ACA limit on out-of-pocket expenses (OOP) has been extremely important to our community due to our high costs. Without this policy, individuals could be responsible for paying tens or even hundreds of thousands of dollars per year. We appreciate that the OOP is maintained in the AHCA, though much like lifetime and annual limits, this protection requires a robust definition of the essential health benefits. We recognize and appreciate that the out-of-pocket maximum is not repealed in the AHCA and ask that this policy be maintained throughout the legislative process.
  •  Financial Assistance for Low-Income Individuals: The ACA included provisions to help low-income individuals purchase health insurance, such as cost-sharing reductions and tax credits. The AHCA would transition these income-based tax credits and cost-sharing reductions to a new age-based tax credit, which would be much less generous for many people. We are very concerned that the financial assistance for low-income individuals as proposed in the AHCA will be insufficient, leading people with bleeding disorders and others to lose coverage.
  • Continuous Coverage: We appreciate the need for an incentive for individuals to maintain coverage since the AHCA is repealing the individual and employer mandates, but we are very concerned that the continuous coverage policy will penalize individuals who lose insurance for financial reasons. Rather than “gaming the system,” individuals in our community work very hard to maintain coverage due to the high costs of their treatments and need for services, but gaps in coverage occur. The continuous coverage policy as currently drafted will make health insurance premiums even more expensive, undermining its intent to incentivize individuals to maintain coverage. We ask that Congress amend this policy to provide relief for individuals who lose coverage due to job loss or financial hardship.
  •  Reinsurance: We recognize the need for insurers to balance the financial costs for having individuals with bleeding disorders and other high-cost, chronic conditions in their pools. Rather than reinstatement of flawed and harmful high risk pools, we support proposals to create a federal reinsurance pool, give states funding to create reinsurance pools, or to implement other innovative ways of assisting plans with balancing their financial risks. We are encouraged by the AHCA’s Patient and State Stability Fund, which will help states bolster their insurance markets and potentially lower costs for patients and insurers.

Access to Medicaid for Those in Need
The ACA included a number of provisions seeking to ensure that individuals have access to health insurance. Approximately 30% of the bleeding disorders community is currently enrolled in Medicaid, with a number of individuals gaining coverage due to the Medicaid expansion authorized by the ACA. We are concerned about a number of Medicaid provisions in the AHCA that would jeopardize access to Medicaid for our community. We ask that Congress reconsider these policies to ensure that increased state flexibility not come at the cost of coverage for our patient population.

  •  Medicaid Expansion: The ACA’s Medicaid Expansion was very meaningful to our community, since parents and childless men and women meeting certain income thresholds were eligible to enroll in Medicaid in the 31 states plus DC that expanded coverage. The repeal of the Medicaid expansion and elimination of enhanced federal funding for the expansion population would lead to individuals with bleeding disorders losing their coverage. We request that Congress maintain the Medicaid expansion and federal contribution for childless adults.
  • Medicaid Financing: More broadly, we are very concerned about the proposals to shift Medicaid to a per-capita and/or block grant financing mechanism. This will significantly reduce federal support for state Medicaid programs, which will likely result in states limiting benefits, imposing higher cost-sharing, or reducing eligibility. We request that Congress maintain the current financing policies for Medicaid.

NHF appreciates the opportunity to comment on the American Health Care Act and Affordable Care Act repeal and replace policies. Congress has a long history of enacting policies to protect our community and once again, we ask for Congress’ support for policies that will ensure that people with bleeding disorders have access to comprehensive, high-quality health insurance that enables them to lead healthy, productive lives. Please contact Michelle Rice, Senior Vice President for External Affairs, at, if we may be of further assistance.


Val Bias
Chief Executive Officer
National Hemophilia Foundation

Cc: Members of the United States House of Representatives