October 28, 2011

October 28, 2011
Specialized HIV Care Must Be Maintained
as Health Care Reform Begins

Welcome to another day in my life. Today is Friday and we have almost made it through another work week. I hope you are having a safe and great week so far. It has been a very busy one for Dab the AIDS Bear and me.

Yesterday, we were videoed and photographed for the Florida Department of Health's Faces of HIV. For a month, they had me write a daily journal about living with HIV/AIDS. Then I unfortunately had this eye infection start this past weekend so my eyes were still very red today for the video and photo. But at least they thought I did a great job with the interview.

Part of what I talked about today was the need for more Ryan White Funding for AICP and ADAP programs and I would also like to do so in this blog today since some new information has come up from Washington, DC.

As access to health care expands under the National HIV/AIDS Strategy (NHAS) and the Patient Protection and Affordable Care Act (ACA), a.k.a. health care reform, it is critical that the effective components of HIV management already in place be recognized and continued as health care delivery systems evolve and expand in coming years. To ensure that all people living with HIV benefit, write members of the HIV Medicine Association (HIVMA) and the Ryan White Medical Providers Coalition (RWMPC) in a new policy paper published by Clinical Infectious Diseases, innovative payment mechanisms and continued public health funding to support and expand specialized care will be necessary.

The threat to HIV related health care is twofold, the authors suggest. A main goal of NHAS is to test more people for HIV, find those unaware of their status and get them into care. However, with ACA, it is unclear what will happen to earmarked funding for HIV services, such as the Ryan White program, which funds HIV care, treatment and support, for uninsured and under-insured people living with HIV in the US.

The Ryan White CARE Act is up for renewal in 2013, around the same time the full ACA regulations are scheduled to go into affect.

One particular concern raised is that the Ryan White program will be overhauled and that people living with HIV will be shifted out of, or steered away from, Ryan White funded HIV clinics and into private medical practices or Medicaid based community health centers lacking in HIV specific expertise and services. In other words, while ACA hopes to provide health insurance for those who currently go without, which includes tens of thousands of people living with HIV, the quality of HIV care may suffer as a result.

HIV medicine is an incredible success story, and people with the virus are now living long, full lives thanks to improved therapy and comprehensive care. But it is imperative that people learn their HIV status and get effective treatment. We have good strategies to achieve this, but it requires an integrated team approach, expertise, and a commitment to investing resources upfront that will reduce health care costs over the long term.

The presidentís NHAS and the ACA are providing an unprecedented opportunity to expand access to health care shown to improve patientsí health and prevent new infections, the statement says. But to turn this opportunity into reality, and to sustain the great gains made against this disease, it is critical that the essential components of HIV care be incorporated as health care reform is implemented. The US government funded Ryan White program has been critical to supporting the HIV care model, but as demand for care grows, innovative payment mechanisms for the Medicaid program, which covers 47 percent of people with HIV in care, are urgently needed. As health coverage is expanded, patientsí lives and our nationís public health will be at risk if we do not build on the HIV care model and continue successful programs like Ryan White.

The policy paper underscores that people living with HIV can have a nearly normal lifespan if they are diagnosed and receive effective treatment and care from an experienced HIV medical provider working with a team of other providers who can deliver the range of support services that most patients need.

As the NHAS and the ACA begin taking shape, various aspects of HIV care must be continued and expanded, including:

Routine HIV testing, particularly in underserved communities, so people with HIV can be diagnosed earlier and linked to integrated systems of care before irreversible harm is done to their immune systems.

A care team led by an HIV expert that includes a care coordinator and access to a range of specialists with HIV experience to treat serious co-occurring conditions, including heart disease, hepatitis, cancer, mental illness and substance abuse.

Access to HIV medications according to the federal treatment guidelines.

Counseling to support adherence to treatment and care.

Linkage to social services that address the daily living and psychosocial needs of patients.

Regular monitoring of patient outcomes through HIV quality measures and electronic health record systems.

Innovative payment mechanisms that recognize the total costs of providing effective HIV care, taking disease severity, nonclinical costs and other factors into account.

Continued public health funding through the Ryan White program to support lifesaving and disease preventing care to the most vulnerable populations.

The HIV provider is the quarterback, but care is effective only when there is full cooperation and coordination among the entire team, from diagnosis to treatment to supportive services. When care is not integrated, people often drop out. More than a third of patients who learn they have HIV are not linked to care within three months of being diagnosed. That has got to change, and we can change it if this model is followed.

So drop your elected officials an email or call and let them know you are watching decisions being made on these issues. Americans living with HIV/AIDS are counting on your help.

Until we meet again; here's wishing you health, hope, happiness and just enough.

big bear hug,

Daddy Dab