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  • HIV No Longer a Death Sentence, but Many With HIV Still Undiagnosed, Untreated


    HIVMA, Ryan White Policy Paper Identifies Key Components of Effective Care, Calls for Innovative Financing

    BOSTON – Significant strides in therapy and care have transformed HIV from a death sentence into a manageable chronic disease – but only when patients are diagnosed, receive good care and needed services, and take their medication. To ensure that all patients benefit, the HIV Medicine Association (HIVMA) and Ryan White Medical Providers Coalition (RWMPC) today published a policy paper in the journal Clinical Infectious Diseases describing the essential components of a comprehensive HIV care program and calling for innovative payment mechanisms and continued public health funding to support this care and expand it those who need it.

    Of the nearly 1.1 million people with HIV, 20 percent don’t know they have the disease, and only 50 percent of people with HIV in the United States have reliable access to HIV treatment, which the recent HPTN 052 study showed not only saves lives but dramatically reduces sexual transmission of HIV from an infected partner to an uninfected one. More than 11,000 people still die of AIDS every year and thousands more are in poor health and struggling.

    “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,” said Joel Gallant, MD, lead author of the policy paper and a member of the HIVMA board of directors. “But it’s 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 president’s National HIV/AIDS Strategy and the Patient Protection and Affordable Care Act are providing an unprecedented opportunity to expand access to effective care shown to improve patients’ health and prevent new infections. 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 U.S. 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, patients’ lives and our nation’s public health will be at risk if we do not build on the HIV care model and continue successful programs like Ryan White.

    “We do not have the capacity to meet the growing demand for HIV care, and that poses a huge threat to this vulnerable population and to all of the gains we’ve made in caring for people with the illness,” said J. Kevin Carmichael, MD, a co-author of the paper and co-chair of RWMPC Steering Committee. “In my clinic in Tucson, we see or hear about patients who fall through the cracks of our current system, which is unacceptable. We need to take a closer look at successful programs such as those funded by Ryan White and apply what we’ve learned to expand access to effective HIV care throughout the country. Our policy paper provides a great starting point for that conversation.” 

    The policy paper underscores that people 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 team of other providers who can deliver the range of support services that most patients need. More patients can benefit through:


    • 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,” said Mari Kitahata, MD, MPH, a co-author of the paper and a professor of medicine at the University of Washington, Seattle. “When care isn’t 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’s got to change, and we can change it, if this model is followed.”  


    Note: For a copy of “Essential Components of Effective HIV Care: A Policy Paper of the HIV Medicine Association of the Infectious Diseases Society of America and the Ryan White Medical Providers Coalition,” published in the Dec. 1 issue of Clinical Infectious Diseases, please visit ( 



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