Tay-Sachs, MSUD Added to Social Security List

By Maia Efrem August 11, 2010

The Social Security Administration has added two genetic diseases that affect Ashkenazi Jews to its Compassionate Allowances list, expediting the awarding of disability aid to sufferers and their families.

Tay-Sachs and Maple Syrup Urine disease were added to the list effective March 1, 2010. They were among 38 diseases and cancers added to the original list of 50 conditions established by the Social Security Administration in 2008. Two other diseases that disproportionately affect Ashkenazi Jews, Canavan disease and Niemann-Pick disease type A, were on the original list.

Once a disease is identified as “one that is recognized on the Compassionate Allowances list, it goes on a fast-track and it can be approved within days,” according to a Social Security spokesperson.

Stefanie Putkowski, a clinical research assistant at the National Organization for Rare Diseases, said that sufferers from rare disorders can sometimes become embroiled in a long process where they are denied benefits. “This is a small blessing for parents or patients who need the disability assistance as soon as possible,” Putkowski said of the additions to the list.

According to the Social Security Administration, parents of disabled children under the age of 18 can apply for Supplemental Security Income and receive up to $674 a month, with the amount varying based upon the income of the parents and the number of individuals in the household.

Maia Efrem is the former research editor and assistant to the editor and was also responsible for the Forward’s annual Salary Survey. Previously she served as the editor of Blognik Beat, a blog written by students who emigrated from or have ties to the Former Soviet Union. Maia is a graduate of Hunter College and Columbia University’s Graduate School of Journalism.

A message from our CEO & publisher Rachel Fishman Feddersen

I hope you appreciated this article. Before you go, I’d like to ask you to please support the Forward’s award-winning, nonprofit journalism during this critical time.

Now more than ever, American Jews need independent news they can trust, with reporting driven by truth, not ideology. We serve you, not any ideological agenda

At a time when other newsrooms are closing or cutting back, the Forward has removed its paywall and invested additional resources to report on the ground from Israel and around the U.S. on the impact of the war, rising antisemitism and polarized discourse.

Readers like you make it all possible. Support our work by becoming a Forward Member and connect with our journalism and your community.

— Rachel Fishman Feddersen, Publisher and CEO