The ALS Association

Ice Bucket Challenge Progress

Latest Legislative News

Tax Cuts and Jobs Act Becomes Law

December 22, 2017

Congress passed the Tax Cuts and Jobs Act, which was signed into law by President Donald Trump. Throughout the process, Congress sought to eliminate many deductions to offset a raise in the standard deduction and simplify the tax code. The ALS Association was involved in two major aspects of the bill relating to the Medical Expense Tax Deduction and the Orphan Drug Tax Credit (ODTC).

As part of an AARP-led coalition, The ALS Association participated in a concerted effort to oppose repeal of the Medical Expense Tax Deduction, which was initially proposed by the House of Representatives. Because of the coalition’s advocacy, the law maintains this deduction with an income threshold for qualifying expenses at 7.5 percent.

Equally important, as part of a coalition led by the National Organization for Rare Disorders (NORD), The ALS Association participated in an intensive effort to maintain the Orphan Drug Tax Credit (ODTC) – a credit that lowers the cost of developing and testing orphan therapies for biopharmaceutical companies who develop drugs for diseases like ALS that affect fewer than 200,00 people at one time. The ODTC would have been repealed entirely by the House absent the leadership of NORD and support from The ALS Association and many other rare disease organizations. While the credit was maintained, the final law reflects the Senate’s proposal to reduce the credit in half from covering 50 percent of qualified medical expenses and drug testing to 25 percent.

The standard deduction for individuals and families is doubled under the Tax Cuts and Jobs Act. This means taxpayers can subtract a greater amount from their taxable income without itemizing deductions on their tax returns. For individuals, this amount will rise to $12,000; for married couples the amount will rise to $24,000.


Update: Senate Expands Medical Expense Tax Deduction

December 8, 2017

The U.S. Senate passed its version of the Tax Cuts and Jobs Act (H.R.1). The bill would temporarily expand the Medical Expense Tax Deduction for two years, lowering the income threshold for eligibility from 10 percent to 7.5 percent of income. The House version repeals the credit entirely.

Now that both the House and Senate have passed their respective versions of tax reform, a House-Senate Conference Committee will be convened to resolve the differences between the two respective versions of legislation.

The ALS Association, in partnership with the American Association for Retired Persons (AARP) and a coalition of nearly 50 patient organizations, opposes any increase to the income threshold for eligibility to deduct medical expenses on itemized returns. This coalition sent a letter to the Conference Committee urging it to support the Senate’s two-year delay to raising the threshold for eligibility to 10 percent of income.

See the coalition letter sent to Conference Committee members here and an ad placed in Politico here.


Update: Senate Maintains Orphan Drug Tax Deduction

December 7, 2017

The U.S. Senate passed its version of the Tax Cuts and Jobs Act (H.R.1). The bill would maintain the Orphan Drug Tax Credit (ODTC), but reduce the value from covering 50 percent of qualified medical expenses and drug testing to 27.5 percent. The House version repeals the credit entirely.

Now that both the House and Senate have passed their respective versions of tax reform, a House-Senate Conference Committee will be convened to resolve the differences between the two respective versions of legislation.

The ALS Association, in partnership with the National Organization for Rare Disorders (NORD) and a coalition of more than 160 patient organizations, support the Senate’s maintaining the ODTC. This coalition sent a letter to the Conference Committee urging it to support the Senate’s 27.5 percent credit as a bare minimum, urging members to strengthen it further.

See the coalition letter sent to Conference Committee members here.


Supporting the Medical Expense Tax Deduction

November 30, 2017

In addition to repealing the Orphan Drug Tax Credit (ODTC), the House of Representatives’ Tax Cuts and Jobs Act (H.R.1) also included a provision to repeal the Medical Expense Tax Deduction. This deduction allows ALS patients and their families to get help with extraordinary medical expenses exceeding 10 percent of income.

The Senate version of Tax Cuts and Jobs Act (H.R.1) retains the Medical Expense Tax Deduction, but under the Affordable Care Act (ACA) the eligible income threshold was raised to 10 percent from 7.5 percent. The ALS Association joined 45 patient organizations urging the Senate to reinstate the pre-ACA eligibility to the 7.5 percent of income threshold.

See the AARP coalition letter to Senators here.


ALS and 90 Other Patient Organizations Oppose Repeal of the Orphan Drug Tax Credit

November 20, 2017

The House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act (H.R.1). The ALS and 90 other organizations, representing millions of individuals with rare diseases, are disappointed and dismayed by this harmful repeal.

The Orphan Drug Tax Credit has proven to be one of the most important incentives for developing innovative therapies for rare diseases or conditions. Without the Orphan Drug Tax Credit, 33 percent fewer therapies could be developed for our patients going forward.

Now that the House has voted to repeal the ODTC, it is more important than ever for the Senate to protect the 30 million Americans with a rare disease. Unlike the House bill, the Senate Finance Committee proposal does not repeal the Orphan Drug Tax Credit entirely. However, we remain concerned that it cuts the credit’s value nearly in half by lowering its value from 50 percent of qualified clinical testing expenses to 27.5 percent.

See the joint statement on the proposed repeal of the ODTC here.

Powered by Blackbaud
nonprofit software