As a longtime HIV benefits counselor and policy advocate, I have spent many years helping to link individuals with their health and disability benefits. Over the years, I have witnessed dramatic changes in the benefits needs of people living with HIV/AIDS.
In the late '80s and early '90s, accessing benefits was fairly direct as most individuals automatically qualified for disability benefits. Things changed dramatically in the late 1990s when there was a sudden need for return-to-work benefits following the introduction of HAART. In recent years, there has been a more troubling trend with regard to benefits, as we now see an unprecedented number of individuals unable to find needed benefits due to their inability to meet outdated disability standards.
Fortunately, we are very close to seeing this barrier eliminated through the passage of the Patient Protection and Affordable Care Act, also known as health care reform. For example, many people who would not qualify for health care under the current criteria will be eligible for either subsidized insurance or for Medicaid under health care reform. Getting coverage will no longer be exclusively linked to disability; it will instead be based on need alone. If implemented correctly, health care reform will illuminate the way to create the improved access to health coverage that the HIV community has long fought for.
While health care reform stands to make dramatic improvements for persons with HIV, it is important to recognize that these changes can feel overwhelming to almost everyone. Leaving familiar health programs to access new ones can be confusing and stressful. The good news is that many new resources are currently being developed to help you navigate this new health system. While health care reform's full implementation is not expected until 2014, it is not too soon to engage in the reform effort.
Here are three important actions that you can take this year to begin the process:
While this might seem simplistic, I can't stress how important it is to understand which programs are currently paying your health care bills. Benefits are confusing to most people. For example, people often confuse their Medicare and Medicaid benefits. And individuals getting care under the Ryan White system or ADAP don't always understand that they are technically uninsured.
Try to understand as much of your personal benefits profile as you can. These are complicated systems, so don't be afraid to ask for help. Ask your case manager, doctor's office, or pharmacist for assistance. Keep copies of all your important benefits paperwork in a safe place. Understanding your current benefits is more important than ever because this will be the information you need to find your new benefits through health care reform.
Over the next few years we will see major attempts throughout the country to derail the health care reform effort. While it will be important to pay attention to these repeal attempts, we can't let this interfere with our efforts to do the work needed to get ready for health care reform.
Project Inform is collaborating with several community partners to embark on an important project that will pull together resources to help you sort out health care reform fact from fiction. This resource will also give you tools to help you understand what health care reform means for you in the coming years. These web-based resources will be available in the next few months. Check Project Inform for more information.
Some of the most powerful tools we have to fight the repeal of health care reform and to ensure that health care reform is designed to meet the needs of people living with HIV/AIDS are personal stories from individuals detailing how the current health care system is failing them. Are you having trouble getting a certain medication? Are you experiencing difficulty accessing a specific type of medical care? How has your lack of health coverage impacted your life?
We definitely want to hear from you. Sharing your personal stories helps to influence policy makers to make critical decisions about fixing our broken health care system. If you have a story that you would like to share, please email Project Inform or Julie Cross.
It is important to be aware of the upcoming implementation of the biggest overhaul our health care system has ever experienced. But it is important to not let the magnitude of this change, political rhetoric or media "noise" scare you away. Begin with the three simple steps listed above in the upcoming months. And remember that HIV activists are mobilizing to get you the information and support you need to insure that the promise of health care reform becomes a reality for all people living with HIV/AIDS.
Julie Cross is a health and disability policy consultant.