When HIV/AIDS first hit the United States in 1981, the expected lifespan once symptoms were manifest was 5 years. Thanks to a young Indiana Teenager with Hemophilia who contracted HIV through a blood transfusion, Ryan White, and the tedious, dedicated work of his family to see the Ryan White Care ACT being enacted, those with HIV have free access to expensive and out of reach lifesaving medications because of insurance and pre-existing conditions clauses, the Ryan White Act Part B Program allowed those with HIV to apply to AIDS Service Organizations offering Care Coordination to get enrolled in Ryan White Part B, receive their healthcare and HIV meds for free.
Since that time, some 30 years later, we have made huge breakthroughs in treatments for HIV. What was once a death sentence, is now a chronically manageable disease. This means that those who have HIV, providing they take their medicines, are expected to live a normal life span as any other person without HIV or another chronically manageable disease.
Much of those affected by HIV/AIDS were those just starting out in their life and in their careers. As a result the history of the contributions to SSDI is such that when the Ryan White Act Part B Program required that to qualify for free Ryan White care, a person with HIV must apply for 100% disability, and go on SSDI plus apply for Medicare. Due to the nature of SSDI, many of those with HIV SSDI payments are less than $1000/mo. Restrictions required by SSDI states that while on SSDI, a person on disability cannot work for more than 6-8 mos and still receive benefits. If they attempt to work even part time to supplement their low income from SSDI, they risk losing their SSDI all together.
Though the Affordable Healthcare Act will help many Ryan White Part B Programs in states by allowing them to serve more people with HIV without having waiting lists, because premiums will for health insurance will be much less than usually State High Risk Insurance Programs in which many are enrolled to cover as secondary insurance to their Primary insurance of Medicare, it is still unclear in many states like Indiana that have chosen to not setup their own Health Exchanges, forcing the Federal Government to setup Health Exchanges for those states.
Because many of the details of the Affordable Healthcare Act will not be worked out at a practical level for many months or even years after the AHA takes effect January 2014, this means that many enrolled in Ryan White Part B will at this point still be required to go on disability 100%, limiting their income to SSDI alone. This places a tremendous living hardship on many with HIV whose careers or jobs were not substantial enough to allow them to even make a poverty wage on SSDI. They are forced to move in with either loved ones, or simply not get treatment at all because they could not afford to live without working or on SSDI Alone.
Therefore we the undersigned respectfully ask President Obama and the Presidential Council on HIV/AIDS (PACHA) consider one or more of the following modifications to the Ryan White Care Act:
1) Do not require applicants to go on SSDI (disability).
2) If required to remain on SSDI, allow those enrolled in Ryan White to work without penalty to their SSDI payments part or full-time (just as if they had reached they age of 65 - at this age, Senior Citizens can work as much as they want without any impact to their SSDI payments.
3) Do NOT require those enrolled in Ryan White, if they choose to work full time, to obtain their own insurance, but remain enrolled in Ryan White.
The simple stress of making ends meet, not having enough income to live, or being dropped from Ryan White, losing access to the life saving medications would simply not be an option.
Additionally, even if the Affordable HealthCare Act is "affordable", there are no statements currently that state that prescription co-pays would be none as they are today for people enrolled in Ryan White. If those enrolled in Ryan White even had to pay 10% co-pay for prescriptions, because of the high cost of HIV medicines and other medications that many are required with HIV+, their co-pay cost could easily cost more then they bring in through their SSDI payment each month, making them choose between living usually without housing somewhere and foregoing their lifesaving medicines, or forgoing any means to make a living income while paying co-pays for their Medications.
We the undersigned at the very least need answers to these questions before January 2014, and which many of us simply are not receiving because of the immense task of getting Health Exchanges up and running, most of which are focused on servicing the 30 million who currently have no insurance, and negating the special needs of the nearly 1 million with HIV and less than 1 million enrolled in Ryan White.