Save the HIV Research Network at AHRQ! |
Now is not the time to abandon HIV clinical research at AHRQ!
Dr. Andrew Bindman, Director
Agency for Healthcare Research and Quality (AHRQ)
Department of Health and Human Services (HHS)
5600 Fishers Lane, Room 6E41
Rockville, MD 20852
Subject: Restore Full Funding for the HIV Research Network at AHRQ
Dear Director Bindman:
The undersigned are writing to you as organizations, HIV/AIDS advocates, researchers and clinicians concerned with promoting access to quality HIV care to urge you to restore $1.6 million for the HIV Research Network (HIVRN). HIVRN was slated for termination in AHRQ’s operating budget for FY2016 and the President’s proposed budget for FY2017. The HIVRN is co-funded by the Health Resources and Services Administration (HRSA) – but the loss of the $1.6 million in AHRQ support would terminate the project and end the only significant HIV/AIDS work being done at the AHRQ.
We realize the AHRQ faced tough choices in determining how to absorb an 8 percent cut to the agency’s topline budget for FY2016. However, the FY2017 budget request for AHRQ proposes an overall increase of $40 million above the FY2016 enacted level – yet fails to restore the $1.6 million required to continue the HIVRN. We believe it is a mistake to eliminate this small but powerful HIV clinical research project, which provides a unique source for information on the delivery, disparities, cost-effectiveness and quality of HIV care in the U.S. and data that are critical to informing health reform and to implementing an effective National HIV/AIDS Strategy.
Established in 2000, the HIVRN provides an irreplaceable longitudinal data set that has been instrumental in tracking data on health outcomes, service utilization and care and treatment costs for HIV-infected patients. HIVRN is comprised of 18 clinical research sites collecting data on more than 25,000 children, adolescents and adults with HIV for more than 15 years. Data from HIVRN has helped to:
• Evaluate the impact of the Affordable Care Act on HIV-infected patients;
• Document changes in the cost of HIV care over time;
• Reduce errors in antiretroviral drug prescribing by 34% across the sites;
• Determine the significant economic value of HIV prevention;
• Inform the HIV adolescent treatment guidelines; and
• Monitor and address HIV-related disparities.
In addition, numerous research studies, agencies and organizations including the CDC, OMB, HRSA, Kaiser Family Foundation, Institute of Medicine, and the Department of Health and Human Services have utilized HIVRN data for allocation of health care resources, treatment guidelines, and standards of HIV care. Also, more than 30 researchers and trainees have used HIVRN data for masters and PhD theses, with seven trainees securing K awards through NIH and two faculty obtaining RO1s using HIVRN data. Those studies have produced findings that have informed important policy changes to improve the quality of HIV care – including development and passage of the HIV Organ Policy Equity (HOPE) Act. The HOPE Act opened the pathway for organ transplants between HIV infected donors and HIV infected recipients.
HIVRN investigators also plan to evaluate important topics including continuing to evaluate the clinical impact of the Affordable Care Act, the impact of utilization of generics on clinical outcomes and development of comorbidities, the prevalence and risk factors for opioid misuse, and risk factors and an intervention for gaps in care in our most vulnerable populations, particularly HIV-infected youth.
Agency for Healthcare Research and Quality (AHRQ)
Department of Health and Human Services (HHS)
5600 Fishers Lane, Room 6E41
Rockville, MD 20852
Subject: Restore Full Funding for the HIV Research Network at AHRQ
Dear Director Bindman:
The undersigned are writing to you as organizations, HIV/AIDS advocates, researchers and clinicians concerned with promoting access to quality HIV care to urge you to restore $1.6 million for the HIV Research Network (HIVRN). HIVRN was slated for termination in AHRQ’s operating budget for FY2016 and the President’s proposed budget for FY2017. The HIVRN is co-funded by the Health Resources and Services Administration (HRSA) – but the loss of the $1.6 million in AHRQ support would terminate the project and end the only significant HIV/AIDS work being done at the AHRQ.
We realize the AHRQ faced tough choices in determining how to absorb an 8 percent cut to the agency’s topline budget for FY2016. However, the FY2017 budget request for AHRQ proposes an overall increase of $40 million above the FY2016 enacted level – yet fails to restore the $1.6 million required to continue the HIVRN. We believe it is a mistake to eliminate this small but powerful HIV clinical research project, which provides a unique source for information on the delivery, disparities, cost-effectiveness and quality of HIV care in the U.S. and data that are critical to informing health reform and to implementing an effective National HIV/AIDS Strategy.
Established in 2000, the HIVRN provides an irreplaceable longitudinal data set that has been instrumental in tracking data on health outcomes, service utilization and care and treatment costs for HIV-infected patients. HIVRN is comprised of 18 clinical research sites collecting data on more than 25,000 children, adolescents and adults with HIV for more than 15 years. Data from HIVRN has helped to:
• Evaluate the impact of the Affordable Care Act on HIV-infected patients;
• Document changes in the cost of HIV care over time;
• Reduce errors in antiretroviral drug prescribing by 34% across the sites;
• Determine the significant economic value of HIV prevention;
• Inform the HIV adolescent treatment guidelines; and
• Monitor and address HIV-related disparities.
In addition, numerous research studies, agencies and organizations including the CDC, OMB, HRSA, Kaiser Family Foundation, Institute of Medicine, and the Department of Health and Human Services have utilized HIVRN data for allocation of health care resources, treatment guidelines, and standards of HIV care. Also, more than 30 researchers and trainees have used HIVRN data for masters and PhD theses, with seven trainees securing K awards through NIH and two faculty obtaining RO1s using HIVRN data. Those studies have produced findings that have informed important policy changes to improve the quality of HIV care – including development and passage of the HIV Organ Policy Equity (HOPE) Act. The HOPE Act opened the pathway for organ transplants between HIV infected donors and HIV infected recipients.
HIVRN investigators also plan to evaluate important topics including continuing to evaluate the clinical impact of the Affordable Care Act, the impact of utilization of generics on clinical outcomes and development of comorbidities, the prevalence and risk factors for opioid misuse, and risk factors and an intervention for gaps in care in our most vulnerable populations, particularly HIV-infected youth.