April 24, 2014
The Honorable Fred Upton
Chairman
Committee on Energy and Commerce
U.S. House of Representatives
2125 Rayburn House Office Building
Washington D.C. 20515
The Honorable Henry Waxman
Ranking Member
Committee on Energy and Commerce
U.S. House of Representatives
2125 Rayburn House Office Building
Washington D.C. 20515
Dear Chairman Upton, Ranking Member Waxman, and Members of the Committee:
We, the undersigned HIV medical providers and community advocates, write to support
the swift passage of the Ryan White Patient Equity and Choice Act (H.R. 4260).
If we are going to finally turn the tide against HIV in America, we need to align Ryan
White with new knowledge on the best approaches to control the epidemic. Most
critically, we must ensure the program is focused on eliminating gaps in the number of
people with HIV who are knowledgeable of their status, linked to and retained in care,
and adherent to their prescribed medications – as illustrated by the “HIV care
continuum.” As stated in the July 2013 presidential executive order establishing a new
HIV Care Continuum Initiative, federal agencies must work to “prioritize addressing the
continuum of HIV care, including by accelerating efforts to increase HIV testing,
services, and treatment along the continuum.”1
Eliminating these gaps in care has become even more important as we have learned more
about the impact of treatment on preventing the spread of the HIV. New studies have
shown that the less of the virus a person has in him, the harder it is to transmit that virus
and infect others. In fact, people with HIV who have an undetectable level of virus in
their bodies have been found to be 100% non-infectious to others.2 Because HIV can only
be transmitted by someone with the disease, this means we can drastically drive down the
number of new infections by getting people with HIV into care keeping them adherent to
treatment.
Unfortunately, the vast majority of Americans with HIV are not linked to or retained in
care, as illustrated by the care continuum. Of the 1.2 million Americans with HIV, 20
percent are still unidentified, only 40 percent are retained in care, and less than 30 percent
have the HIV virus under control (and thus rendered noninfectious to others). Our goal
1
http://www.whitehouse.gov/the-press-office/2013/07/15/executive-order-hiv-care-continuum-initiative
No-one with an undetectable viral load, gay or heterosexual, transmits HIV in first two years of
PARTNER study, NAM AIDSMap, March 4, 2014. http://www.aidsmap.com/No-one-with-anundetectable-viral-load-gay-or-heterosexual-transmits-HIV-in-first-two-years-of-PARTNERstudy/page/2832748
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has to be to eliminate these gaps, so that virtually everyone who has HIV is adherent to
treatment. This will result not only in healthier people, but also in a virtual elimination of
new infections.
Addressing these gaps also means ensuring that funding is following the epidemic.
Surveillance data from the Centers for Disease Control and Prevention indicates a
significant and disproportionate impact of HIV in the South.3 In addition, many states in
the Midwest are now seeing a disproportionate increase in new HIV infections. Despite
this trend, these states receive less Ryan White funding per person with HIV compared to
other regions.
Finally, we cannot successfully address gaps in the care continuum if Ryan White does
not enable patients more choice in how and where they seek care. Too often individuals
who utilize Ryan White services are forced to use service providers that may not meet
their individual health needs. This not only leads to inefficiencies and wasted funding,
but also it inhibits patients from adhering to their treatment, which means they have
worse health outcomes and will potentially become more infectious to others.
The Ryan White Patient Equity and Choice Act will enact desperately needed solutions to
these problems by instituting the following changes:
I. The Act ensures services that directly address the HIV continuum of care
are prioritized


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II.
The Act helps ensure that areas where the epidemic is growing will have
the necessary resources to eliminate gaps in the continuum of care
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III.
Linkage, retention, and treatment adherence services are clearly defined
as “Core Medical Services”.
Incentives grantees to prioritize the provision of continuum services in
their community.
Ensures that care is coordinated and led by experienced providers.
HRSA is required to examine the level of funding equity between states
and eligible areas receiving Ryan White funding, and submit a plan to
Congress to ensure that funding does not vary more than 5 percent per
person with HIV among each state and area.
The Act supports better treatment adherence and health outcomes by
promoting patient-centered care and choice

Establishes a Special Project of National Significance (SPNS) that will
develop a model of patient-centered care. As part of this effort, grantees
“ HIV/AIDS Epidemic in the South Reaches Crisis Proportions in Last Decade.” Duke Center for Health
Policy and Inequalities Research. December 2011.
http://southernaids.files.wordpress.com/2011/10/research-report-final-revised10-26-121.pdf
3
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will assess the extent to which patient centered care is incorporated into
in their area, and HRSA will examine how to incorporate patientcentered care throughout the Ryan White program.
Requires states to implement an ADAP pharmacy network that includes
specialty pharmacies that focus on the HIV population. In addition, it
protects privacy and supports better adherence by enabling patients to
choose whether or not they want to use mail-order pharmacy services.
The Ryan White Care Act has been a tremendously successful program with broad
bipartisan support for many years. By reprioritizing this program, we will seize a critical
an opportunity to make sure that funds are being spent efficiently to end the HIV/AIDS
epidemic. Eliminating the gaps illustrated by HIV care continuum is possible if we take
what we know and spend smarter.
This work has become even more important because other providers in our health care
system, such as Medicaid and private insurance, do not cover most HIV continuum
services and do not have the HIV expertise of Ryan White. We know this because 70% of
Ryan White patients already have some form of health insurance that does not provide
these services. The implementation of health care reform does not dramatically change
this situation. In fact, it creates even greater need for Ryan White – particularly in states
that have chosen not to expand eligibility in their Medicaid program.
Thank you for your consideration of this important matter. Our continued commitment to
the Ryan White program is critical if we are to be successful in preventing the spread of
HIV and saving lives.
Sincerely,
Medical Providers and Community Advocates:
AIDS Healthcare Foundation, National Organization
AIDS Outreach Center, Ft. Worth, TX
AIDS Partnership, Inc., Clearwater, FL
AIDS Taskforce of Greater Cleveland, Cleveland, OH
Alamo Area Resource Center, San Antonio, TX
Amine Wellness, Inc., Charlotte, NC
Aniz Inc., Atlanta, GA
Berevard AIDS Services, Titusville, FL
Carolina Equality, Columbia, SC
Citywide Project, Atlanta, GA
Community Health Interventions, Fayetteville, NC
Community Outreach Youth Program, Inc., Fort Piece, FL
Cumberland County HIV Task Force, Fayetteville, NC
Eastern Virginia AIDS Network, Norfolk, VA
Ecumenical AIDS Coalition, Atlanta, GA
Emerald Development and Economic Network (EDEN, Inc.), Cleveland, OH
EVMS AIDS Resource & Consultation Center, Norfolk, VA
Extraordinary Events for Special People, Tampa, FL
Free Clinic, Cleveland, OH
Grace House and Hope Gardens Treatment Centers, Cumberland, County, NC
Greater New Guide, Baton Rouge LA
Infectious Disease Clinic for Cape Fear Valley Hospital, Cape Fear, NC
Keep Hope Alive, Baton Rouge, LA
Men's Health Initiative, Atlanta, GA
Mental Health Services, Cleveland, OH
Miami Valley Positives, Dayton, OH
NAACP/Charlotte Chapter, Charlotte, NC
National 100 Black Women Coalition
Partnership In Health/Caring, Fayetteville, NC
Positively U, Inc., Orlando, FL
Regional AIDS Interfaith Network (RAIN), Charlotte, NC
San Antonio AIDS Foundation, San Antonio, TX
Sandy Rogers Holistic Wellness, Fulton County, GA
Sickle Cell, Inc., Fayetteville, NC
South Carolina Equality, Columbia, SC
Southern Regional Area Health Education Center, Cumberland County, NC
Synergy Health Inc., Tampa, FL
Tampa Hillsborough Action Plan, Inc., Tampa, FL
Thomas Family Wellness, Charlotte, NC
Triangle Empowerment, Durham, NC
TRUTH Project, Houston, TX
United Neighborhood Children Organization (UNCO), Fort Pierce, FL
Volunteers of America, OH
Westside Catholic Center, Cleveland, OH
Whittier Rio Hondo AIDS Project, Whittier, CA
Nina B. Baltierra, Clinical Research Assistant UNC-Chapel Hill School of Medicine
Kathryn E. Muessig, Assistant Professor, UNC Gillings School of Global Public Health
Municipalities and Local Representatives:
City of Dallas, TX
City of Columbia, SC
City of West Columbia, SC
Councilwoman C. Denise Marcelle District 7, Baton Rouge, LA
Councilman Jim Manning, District 8, Richland County, SC
Cumberland County, NC
Cumberland County Commissioner Charles Evans, Cumberland County, NC
Georgia State House Member Able Mable
Mayor Chris V. Rey, Spring Lake, NC
Mayor Frank Jackson, Cleveland, OH
Community Churches:
Bethesda AME Zion Church, Charlotte, NC
Blessed Family of God Church, Fayetteville, NC
Centreville Church, Centreville, MS
Clement Memorial Church, Charlotte, NC
CN Jenkins Presbyterian Church, Charlotte, NC
Columbus Chapel AME Zion Church, Charlotte, NC
Common Ground Ministries, Atlanta, GA
Deliveries Temple Church, Ft. Worth, TX
Gentle Spirit Church, Atlanta, GA
Good Samaritan Church, Pinellas, FL
Greater Piney Grove, Atlanta, GA
Greenville Memorial AME Zion, Greenville, NC
East St. Paul Church, Ft. Worth, TX
Evening Star Tabernacle Church, Tampa, FL
Have Faith Will Travel, Tampa, FL
Hopewell AME Zion Church, Charlotte, NC
In The Image of Christ, Ft. Pierce, FL
Interfaith Community Church, Fayetteville, NC
Kingdom Impact Global Ministries, Charlotte, NC
Ministers Round Table of Fort Worth, TX
Ministers Round Table of Dallas, TX
Ministers Round Table of Austin, TX
Ministers Round Table of Houston, TX
Ministers Round Table of San Antonio, TX
Moving Globe AME Zion Church, Charlotte, NC
Mt. Carmel Baptist Church, Baton Rouge, LA
Mt. Pilgrim Baptist Church, Baton Rouge, LA
Myers Tabernacle AME Zion Church, Charlotte, NC
New Covenant Baptist Church, St. Petersburg, FL
New Freedom Missionary Baptist Church, Baton Rouge, LA
New Hope Baptist Church, Baton Rouge, LA
Open Door Church, Tampa, FL
Our Lady of Lourdes, Atlanta, GA
Reaching Out Ministries, Fort Worth, TX
Reeves Temple AME Zion Church, Charlotte, NC
Saint Mary Our Lady of Grace, St. Petersburg, FL
Saint James AME Church, Fort Worth, TX
Victory For The World Church, Stone Mountain, GA
Wesley AME Zion Church, Charlotte, NC
Williams Chapel Church, Spring Lake, NC