April 14, 2009

Eliminate the Wait for Health Care

Federal law requires that people who become disabled wait two years after they begin receiving social security disability insurance before qualifying for health care benefits from Medicare. Advocates are urging people to take action and share their stories now so they can make sure that eliminating the wait period is part of the health care reform package that will be introduced in Congress later this year.

Imagine that you’re so disabled that you can no longer work—and that you’re entitled to receive income assistance from the federal government—but are then told you must wait two years before qualifying for public insurance to cover the health care costs associated with your disability. That’s actually the law in the United States, and it affects tens of thousands of people every year—including people with HIV. The law states that people who qualify for Social Security Disability Insurance (SSDI) may also apply for Medicare, but they may not receive benefits until after they’ve been disabled for 24 months.

Senator Jeff Bingaman (D–New Mexico) and Representative Gene Green (D–Houston) have introduced bills in both houses of Congress to eliminate this waiting period, as they have for a number of years now. Advocates don’t think the bills have any chance of passing on their own because of the large price tag involved with eliminating the wait period, but they are hoping that the bills will get picked up as a part of the larger health care reform package that is expected by this summer in the House and Senate. They worry, however, that unless enough members of Congress sign on as cosponsors of the bills now, the reform might never make it into the larger package.

The HIV Medicine Association (HIVMA) in Arlington, Virginia, and 120 other nonprofit groups have signed on to a coalition supporting the bills. Andrea Weddle, the executive director of HIVMA, says, “When people think about it, it makes no sense to delay health care coverage for someone you’ve already decided is too sick to work. It just makes no sense!”

Paul Precht, the policy director for the Medicare Rights Center (MRC), who oversees the coalition, says that the greatest obstacle to getting the bills included in the health care reform package is that lawmakers may not even be aware of the statute mandating the two-year wait period. To that end, Precht says his group is hoping to find someone in every congressional district in the country who is willing to share his or her story of being stuck in that wait period—and he hopes people will come forward now.

Falling Into the Gap

The Social Security Administration oversees government benefits for retired people and people who have become disabled. To qualify for Social Security Disability Insurance (SSDI), recipients must have a fairly extensive work history and have paid into the Social Security program over the years. They also have to meet certain medical criteria judging them to be so disabled that revenue-generating work is no longer possible. As anyone who has applied for SSDI knows, it can be an onerous and lengthy process. Claims are often denied the first time around. Once applicants are deemed sufficiently disabled, however, they are also eligible to apply for Medicare—but they won’t get it until they’ve received 24 months of SSDI.

The Medicare wait period has been with us for decades and, arguably, has outlived its purpose. When legislators passed the 1972 law allowing disabled people to receive Medicare, the legislation deliberately included the two-year wait period to reduce federal spending in light of the fact that many qualifying individuals were able to continue private health insurance long after leaving full-time employment.

Today, however, the MRC estimates that nearly 40 percent of Americans go at least some period of time during those 24 months without health insurance. Nearly a quarter are uninsured for the entire two years. Anne Donnelly, director of health care policy for the San Francisco–based HIV information and advocacy group Project Inform, says that it’s uncertain how many of these people are living with HIV but that anecdotally she has heard it is a significant number.

Donnelly also says such people are likely to live in the South and Midwest, where state Medicaid programs have some of the strictest income requirements. “In some places you have to be making practically nothing in order to qualify for Medicaid,” Donnelly says. While Precht says that many people simply can’t afford to pay out of pocket for insurance during the wait period, Weddle points out that some people living with HIV waiting on Medicare have access to AIDS drug assistance programs (ADAPs), which can defray the costs of care. However, some state ADAPs are much more limited than others, forcing many to go without care or treatment for non-HIV-related health problems.

How You Can Help

The Congressional Budget Office calculates that eliminating the 24-month wait period could cost an additional $41 billion between 2010 and 2014 or $113 billion through 2019. The price tag has been the bills’ downfall in previous years, but advocates contend that eliminating the wait period makes perfect sense within the context of broader health care reform.

Precht says that people can easily write to their representative or senator—find your elected officials at Project Vote Smart—and urge them to sign on in support of the bills on the Medicare Rights Center’s website. “Phone calls always help too,” Precht says. “Or write letters to the editor of your local papers.”

Precht’s group would like to collect at least one personal story in every congressional district from people who have been stuck in the Medicare wait period. He says that people who want to share their stories can do so through the MRC website. Such stories, he says, will be extremely helpful in convincing lawmakers to support the bills.

One of the best ways for lawmakers to show support will be to sign on as cosponsors, and Precht says this is precisely what people should ask for when contacting their elected Congress members. He says most lawmakers are supportive when they learn about the issue because there’s simply no “rational defense for it.”

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Previous Comments:

Robert Rosado, Clermont, FL, 2009-04-19 21:44:58
I get HIV to a cut at work, and been sick since 2/2006 still geting the runaround from SSA it been hard to get help fighing for my right to get Social Security Disability, can you help me with my case, I have try to go to lawery but they do not when to take my case.

Don, Long Beach, CA., 2009-04-19 03:17:26
I'm one of those Hiv patients who had to wait the 24 months before I got Medicare. My COBRA from my job was expensive. Every month, I got deeper and deeper into debt taking cash advances to pay for my health insurance and stay alive. I was too ashamed to tell my friends or family about my struggle. The financial stress added to my weakened immune system. Today, I'm fighting ADAP and the State of Calif., it's a constant battle. But, I'm doing my best at coping with my struggle.

Bill Cottrill, weston, 2009-04-16 14:47:35
I didnt have to wait the two yrs becouse of the time it took to get disability so i was a lucky one but have to rember to apply for the extra help from social securtity to pay for meds and spend downs.It does help alot and everyone needs to do it

Michael, Haslett, MI, 2009-04-16 10:53:04
I agree that this needs to change. Those who are disabled are sick to start with and need health care NOW. Not 24 months from now. To many are passing away each year while waiting on their 24 month waiting period to end so they can get their health care. Please everyone, write your senators and congressmen and ask them to vote for this bill.