April Advocacy Update

This month’s advocacy update provides a brief report on our ongoing efforts to increase federal funding for myotonic dystrophy research and includes practical information for community members in need of health insurance coverage during the COVID-19 pandemic.

Myotonic Research Funding Update

In late March, Congress passed an unprecedented $2 trillion coronavirus response bill “CARES Act” to provide medical and economic relief during the pandemic. While Congress adjourned for recess following passage of this legislation, the congressional appropriations committees are working behind the scenes to draft budget bills funding the National Institutes of Health and the Department of Defense Peer Reviewed Medical Research Program. We continue our outreach to Congress urging increased federal funding for these vital research efforts with an emphasis on the need for increased support for myotonic dystrophy research. We anticipate Congress will release drafts of these bills in early summer and we will email a legislative action alert in a few weeks so community members can urge Congress to support these requests. Your participation in this campaign is vital so they we can fund important research to accelerate the discover of new treatments and a cure for myotonic dystrophy. Learn more about becomming a myotonic dystrophy advocate!

What to Do If You Don’t Have Health Insurance Coverage?

With record numbers of Americans losing their jobs and often their accompanying health insurance coverage as a result of the pandemic, many individuals and families have questions about health coverage. While the Trump Administration has declined to reopen the open enrollment period under the Affordable Care Act “Obamacare”, there are several options that may help.

  • Under the COBRA law, if you worked for an employer with 20 employees or more, you may be eligible to continue your current coverage. However, this can be an expensive option and you will have to pay the entire monthly premium. This coverage does allow you to see your current doctors and hospitals with the same deductibles and co-pays as you had before. Your health plan must notify you if you are eligible for COBRA and you must decide within 60 days to enroll.
  • If you didn’t have insurance before the pandemic or if you have lost your income because of a job loss, you and your family may qualify for Medicaid coverage. The Medicaid program provides health insurance coverage for low-income Americans. Each state runs its own program, although it’s jointly funded by federal and state governments, so each state program is a little different. You can apply any time and eligibility is based on monthly income, not annual income. Nearly 6 million adults right now qualify for Medicaid but aren't enrolled. Visit your state’s Medicaid program website for more details.
  • Finally, losing a job is a “qualifying event” under the Affordable Care Act so while the enrollment window has closed, you may be able to shop for a new plan through www.HealthCare.gov or your state-run exchange. In some states like California, Washington and New York you don't need to have a "qualifying event" like job-based coverage loss or the birth of a child to newly enroll right now. The Kaiser Family Foundation has an easy to use subsidy calculator so you can see what you might pay in premiums for these plans. Your unemployment benefits count as income. According to KFF, more than 4 million Americans who are uninsured would qualify for a subsidized Obamacare health plan that would cost them nothing in monthly insurance premiums.

Coronavirus Aid, Relief, and Economic Security Act

Myotonic has reviewed the Coronavirus Aid, Relief, and Economic Security (CARES) Act and has identified sections that may be especially relevant to the myotonic dystrophy community. You can read the full summary document here. Below are exerts regarding Cash Payments to Americans:

  • Who qualifies to receive a check and how much will an individual receive? Anyone who filed a tax return this year or last year. Individuals receive $1,200, married couples receive $2,400, and child dependents (under 17) receive $500.
  • What are qualified income levels based off of? There is no qualified income threshold or requirement to receive the rebate. However, the rebate phases out at a 5 percent rate above adjusted gross incomes of $75,000 for single filers, $112,500 for heads of household, and $150,000 for joint filers.
  • Can those collecting Social Security or disability receive a check? Yes, if they filed a tax return this year or last year, or received a form SSA-1099. Otherwise, they need to file a tax return.
  • Will SSA administer the funds to my EBT/Debit card that I receive my SSA benefits through? Our understanding is that IRS is sending out the rebates (via direct deposit or checks)
  • How does an individual claim their check? They do not need to claim their checks (unless they have not either filed a tax return this year or last year) – IRS will send out rebates automatically to their direct deposit or to the address provided on the last tax return submitted.
  • How long will it take for this check to be delivered? Rebates sent via direct deposit will take a few weeks. Rebates sent via checks may take a few months.
  • Will I be taxed on this check? No, rebates are not taxable.
  • Will I be eligible if I haven’t finished filing my 2018 taxes? You need to have filed either a 2018 tax return or a 2019 tax return. If you have not filed either, you will not be eligible. You can file a 2019 tax return now to claim the rebate.
  • Will I be eligible if I have a lien against me, but I am in non-collect status? Yes. Rebates will not be subject to garnishment, except if back child support is owed.

Learn more about COVID-19's impact on the myotonic dystrophy community.

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