The Senate passed their tax reform bill. In the dead of night. Overnight -- shortly before 2 AM on Saturday.
Despite protests and outcries from almost every sector: non-profits, disability communities, healthcare providers, educators, universities, researchers, graduate students (future researchers, geneticists, nurses, PTs, physicians)...
Now, both the House and Senate have passed tax bills that:
Click here to learn more about the impact these issues will have on our community.
Since these bill each contain different provisions, they will now need to be ‘conferenced’ before being signed into law. That means, there is still an opportunity for us to reach out to the elected officials who have been elected to represent us — and let them know how the provisions of this bill will impact each of our families.
If you take action and have not already registered, you will receive periodic updates and communications from Parent Project Muscular Dystrophy.
Please Oppose the Proposed Tax Plan
Dear [Decision Maker],
I'm writing to you today to urge you to consider the impact the tax legislation will have on my family as a member of the Duchenne community and millions of other Americans living with complex health conditions. The House and Senate bills contain provisions that will not only hurt the momentum seen in drug development for rare conditions but will directly impact family expenses and overall quality of life. As the bills go to Conference, I urge you to consider the impact these provisions will have on my family as you finalize the bill language.
The most concerning issues within include:*Patient Access IssuesIndividual Mandate is repealed.The bill immediately repeals the Affordable Care Act requirement that individuals purchase health insurance. This provision will result in 13 million fewer insured individuals and an annual premium increase of 10 percent, according to the non-partisan Congressional Budget Office (CBO) analysis.Medical Expenses Tax Deduction.Currently, individuals can deduct their medical expenses if their total expenses are greater than 10 percent of their income. Many people with complex diseases and disabilities rely on this deduction to help them afford their care. The House bill repeals this deduction, but the Senate bill retains it. This will now be reconciled as the bill is conferenced -- there is time to LET CONGRESS KNOW THIS IS NOT ACCEPTABLE.As these bills go to Conference, we urge Congress to maintain the deduction for medical expenses to help people with disabilities and complex conditions afford their care.__________*Orphan Drug Tax Credit The Orphan Drug Tax Credit is in jeopardy.The Senate bill diminished the Orphan Drug Tax Credit, which encourages drug manufacturers to produce medicines for smaller patient populations. By modifying the tax credit's methodology, the Senate bill effectively reduced the tax credit by half. Further, the Senate's addition of the Alternative Minimum Tax (AMT) proposal into their plan stood to render the values of the ODTC and Research and Development (R&D) Tax Credit useless. The House bill eliminated the ODTC completely.We view the 27.5 percent credit passed as part of the Senate's legislation as the bare minimum, and implore you to strengthen it further. We strongly oppose any additional weakening or outright repeal of this life-saving credit. We also ask that you ensure the Senate's corporate Alternative Minimum Tax (AMT) proposal does not render the values of the ODTC and the Research and Development (R&D) Tax Credit useless.Under current law, the ODTC allows drug manufacturers to claim a tax credit of 50 percent of the qualified costs of clinical research and drug testing of orphan drugs. The ODTC was enacted in 1983 in the Orphan Drug Act (ODA) and provides incentives for drug companies to develop products for rare diseases. In the decade before the Orphan Drug Act, only 10 medicines were developed by industry for rare diseases. Since 1983, however, more than 3,500 potential treatments have been designated as an orphan drug, and more than 500 orphan therapies have been approved by the Food and Drug Administration (FDA). This is a direct result of the incentives provided by the ODA, including the tax credit.As the bills are Conferenced, we urge Congress to consider the 27.5% Orphan Drug Tax Credit passed by the Senate as the bare minimum -- and implore you to strengthen it further. We also ask that you ensure the Senate's corporate Alternative Minimum Tax (AMT) proposal does not render the values of the ODTC and the Research and Development (R&D) Tax Credit useless.________*Charitable GivingThe the impact this bill will have on the non-profit sector is staggering.Doubling the Standard Deduction will likely discourage charitable giving.Currently, 30 percent of individuals itemize their tax returns. The bill doubles the standard deduction, which is expected to result in only 5 percent of individuals taking the standard deduction. While research has shown that many factors affect people choosing whether to give, the tax incentives often dictate how much individuals give. Fewer people itemizing, along with other changes such as reducing the estate tax, will mean that they give less money to charity. This is predicted to have a dramatic impact on non-profit organizations. As these bills are Conferenced, we urge Congress to include the universal charitable giving deduction, which would be allowed in addition to the standard deduction. This would create a fairer tax code that enables everyone to benefit from this tax incentive.The Johnson AmendmentProposed is a repeal of this 63-year-old law that protects nonprofit nonpartisanship. This would severely damage the credibility of the charitable community and would allow 501(c)(3) organizations to become subject to partisan politics and pressures. This will create a significant paradigm shift in non-profits' ability to serve the community and operate. We cannot let this happen.We urge Congress to leave the Johnson Amendment alone in the tax reform debate and allow nonprofits to remain non-partisan.
These elements of this legislation are a direct hit on our Duchenne community and those with complex medical conditions. They will immediately impact the financial burden on personal households and threaten to slow drug development and innovation into treatments and cures for Duchenne.Please oppose this plan so that my family and millions other don't suffer catastrophic consequences.
Sincerely,[Your Name] [Your Address] [City, State ZIP][Your Email]