With the House passage of its tax reform proposal, the debate now moves to the Senate. The Senate tax reform proposal would have many effects on our nation’s tax code, but it includes a few proposals that are particularly important for people with bleeding disorders and other high-cost chronic conditions. We need everyone to call their Senators now and share how the tax reform proposal will harm the bleeding disorders community.

Policies Important to Bleeding Disorders Community

Repeal of the Individual Mandate: The Senate bill would repeal the Affordable Care Act’s (ACA’s) individual mandate. Senators support this as a way of achieving a key ACA repeal goal while saving the government money (since fewer people will receive government subsidies for their health insurance), which can offset other costs in the bill. But, the Congressional Budget Office (CBO) estimates this will result in 13 million fewer people having health insurance coverage. This will further destabilize the health insurance market, raising premiums for people with bleeding disorders and others who need to maintain coverage.

Repeal of the Orphan Drug Tax Credit:  The Senate bill would make changes to the Orphan Drug Tax Credit (ODTC), which currently allows manufacturers of drugs for rare disease patient communities – such as hemophilia– to claim a tax credit of 50 percent of the qualified costs of clinical research and drug testing of orphan drugs. We are concerned that proposed changes would limit the number of eligible drugs and lead to fewer available treatments for rare disease patient communities.

Repeal of the Medical Expenses Deduction:  We want to maintain the current tax policy that allows individuals to deduct the amount of total medical expenses that exceed 10% of a person’s gross adjusted income. While the Senate bill does not yet include this provision, it was repealed in the House bill, and we are concerned it could be added as an amendment or as part of the House-Senate conference agreement.

Increase of the Standard Deduction: The Senate bill would nearly double the standard deduction, which means that many fewer individuals will itemize their deductions. Experts predict that this change will lead to significantly lower rates of charitable giving. As NHF and chapters seek to diversify their funding and receive more charitable donations from individuals, this tax reform proposal may negatively affect fundraising efforts.

Take Action Today!

First, go to govtrack.us to get the phone numbers for your Senators. Then call their offices and use these bullet points to guide your comments. Feel free to add any personal comments about these proposals.

  • I am one of your constituents, and I am calling to discuss tax reform.
  • I/my loved one is affected by a bleeding disorder, which means that I have very high medical expenses.
  • Please do not repeal the individual mandate, since that will destabilize the health insurance market and increase costs for people who need insurance like me.
  • Please maintain the orphan drug tax credit, which leads to more development of drugs for rare diseases, like bleeding disorders.
  • Please maintain the deduction for medical expenses. Repealing this provision would increase costs for people with high medical bills.
  • Finally, I’m concerned about how the increase in the standard deduction will affect charitable giving for nonprofits like patient advocacy groups, which use donations to provide education and support services for millions of Americans. 

NHF is continuing to monitor the progress of tax reform and will update the community as the bills progress.