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Running head: RYAN WHITE HIV/AIDS PROGRAM

Ryan White HIV/AIDS Program

Elizabeth Rutan

November 18, 2015

[email protected]

RYAN WHITE HIV/AIDS PROGRAM

Abstract

Ryan White, the namesake of the Ryan White HIV/AIDS Program (RWHAP), was a child who contracted AIDS through a contaminated blood transfusion. Shortly after his death the RWHAP passed in 1990 to provide funding for education, prevention, and support services for people living with HIV/AIDS (PLWHA). With the emergence of effective medications, efforts and funding increased to address viral suppression. Rates of viral suppression in the RWHAP (74%) are significantly higher than the national average (25%).1 Suppression rates in the program generally fall slightly below (74%) those of other programs (79%).2 However, as a safety-net program, recipients are more likely than non-RWHAPs to be impoverished, uninsured, homeless, incarcerated, and have less than a high school education.2 Since the passing of the Affordable Care Act (ACA), access to health insurance has increased for PLWHA through the expansion of Medicaid and for those who were previously denied coverage due to their pre-existing condition. Despite these improvements, many with some form of insurance still rely on the RWHAP for additional services and funding for medications.3 Additionally, expansions in Medicaid did not take place nationwide. The need for the RWHAP still exists, but funding should be reallocated to adjust for demographic changes.

Introduction

Ryan White was 13 when he was diagnosed with AIDS in 1984. As a hemophiliac, he

received blood transfusions, one of which was contaminated with the AIDS virus. White became

well known through the media for his fight to attend school in his hometown. Members from his

hometown were afraid of AIDS and did not want White attending school with their children.

White won this fight in 1986 “when he started eighth grade, thanks to court order”.4 One month

before his high school graduation, Ryan White died of AIDS on April 8, 1990.

The Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE

Act) was passed under President George H. W. Bush’s presidency on August 18,1990.4 The Act

was authorized for a five-year period and administered by the Health Resources and Services

Administration (HRSA).2 The CARE Act was reauthorized in 1996, 2000, 2006, and 2009. Due

to several changes in the title of the program, the Ryan White HIV/AIDS Program will be the

general title used to refer to the program as a whole. The RWHAP is designed to be the final

option to provide “core medical services, including outpatient medical care, medications for the

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treatment of HIV disease, medical case management, and antiretroviral therapy (ART) adherence

support”.2

Viral suppression, defined as <200 copies/mL, is an essential component for treatment

and prevention.6 Viral suppression helps improve the health of the PLWHA and helps reduce the

ability to transmit the virus to others.7 Rates of viral suppression in the RWHAP are generally

much higher than the overall average for PLWHA and comparable but slightly below rates from

non-RWHAPs. The RWHAP serves as a safety net for those who otherwise would have little or

no access to HIV care and support. Because of this, the program has general population trends

when compared with non-RWHAPs. The population of the program is more likely to be

impoverished, uninsured, homeless, incarcerated, and less likely to have a high school

education.2

Thanks to new policy changes from the Affordable Care Act, many who were previously

denied coverage or did not qualify for Medicaid are now able to receive medical funding.

However, even those who have recently gained insurance, HIV medications are often still out of

reach financially. Additionally, those in states that did not expand Medicaid remain in a coverage

gap without medical funds. These limitations demonstrate the persisting need for the RWHAP in

addition to other programs.

Policy Background

On March 6, 1990 the Comprehensive AIDS Resources Emergency Act of 1990 was

introduced to the Senate and introduced to the House of Representatives on April 4th. The bill

intended to “amend the Public Health Service Act to provide grants to improve the quality and

availability of care for individuals and families with HIV disease […] and to establish a program

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of grants to provide preventative health services with respect to acquired immune deficiency

syndrome”.4 Ryan White’s mother, Jeanne White, was the driving force behind the bill. She

gained the initial support necessary to push the bill through. During May and June, the bill went

through the House Committee on Energy and Commerce, Subcommittee on Health and the

Environment, and finally the House Rules Committee. For the next few months, the bill bounced

between the Senate and House of Representatives undergoing amendments until President

George H. W. Bush signed it on August 18th as the Ryan White CARE Act.4 The Act was

authorized for a five-year period and administered by the HRSA.2

The Ryan White HIV/AIDS Program started with four titles in 1991 that were later

renamed Parts A, B, C, D, and F. The RWHAP initially focused on early detection, education,

social services, and relief. As new medications emerged, the program increased its focus on viral

suppression to improve the health of those living with HIV/AIDS and decrease the ability for the

virus to spread.

Part A identifies and provides funding to urban areas that present the highest need

measured by number of AIDS cases. HRSA originally developed grants for Eligible

Metropolitan Areas (EMAs) in 1986. Title I of the CARE Act expanded these areas to include a

total of 16 areas that were then able to receive funding for “outpatient and ambulatory health and

support services and inpatient case management designed to keep people out of the hospital or

expedite their discharge”.4 EMAs are defined as “cities with 2,000 AIDS cases in the most recent

5-year period”.4 The 2006 reauthorization introduced Transitional Grant Areas (TGAs) that have

between 1,000 and 1,999 “reported AIDS cases during the most recent 5 years, and a population

of 50,000 or more”.4

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Part B was developed to provide funding to a wider geographical range than is provided

by Part A. Part B (Title II) provides grants to states and rural areas for “a wide range of medical

and support services”.4 In addition to a broad range of services, Part B includes the AIDS Drug

Assistance Programs (ADAPs) that provides “medications to people living with HIV/AIDS”.4 At

the program’s inception, both title I and II were funded equally. Over time, it became evident

that funding for Title II should be increased to allow for improved access to highly active

antiretroviral therapy (HAART).4 In the 1996 reauthorization, ADAP became a division of its

own, as the major component of Part B. As of 2010, ADAP funding alone was more than the

funding for Title A, C, D, or F. The development and success of HAART facilitated the growth

of Part B “into the single largest component of the act”.4

Part C, or Early Intervention Services, is one of the original four titles and provides

funding for early interventions services to designated sites. These sites promote primary,

secondary, and tertiary prevention of HIV/AIDS progression through increased HIV testing and

early treatment. Some examples of primary care sites that are eligible to receive funding include:

Federally Qualified Health Centers, family planning agencies, Comprehensive Hemophilia

Diagnosis and Treatment Centers, rural health clinics, [and] Indian Health Service facilities.4

From 1991, the number of sites increased from 114 to 350.4

Part D (Title IV) supports women, children, infants, and families of those affected by

HIV. Part D played a crucial role in reducing mother-to-child transmission of HIV through the

promotion of Zidovudine (AZT) medication adherence. Beginning in 1990 Title IV used funds to

research therapies “for children and pregnant women with HIV and provide health care, case

management, and support services for these patients and their families”.4 In 1994, research found

AZT to be effective in preventing mother-to-child transmission of HIV. Through outreach and

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education Part D helped to decrease transmission from around 2,000 per year in 1990 to around

200 in 2005. Unlike the other titles, Part D devotes some funds to “non-infected family

members”.4

Part F of the Ryan White CARE Act was added in the 1996 reauthorization to include

specialized training and education, special projects, and The Dental Reimbursement Program.

HRSA introduced four AIDS Education and Training Centers (AETCs) in 1987 to provide

training to “health care providers in HIV treatment and prevention”.4 The Special Projects of

National Significance (SPNS) program delivers and assesses programs that are directed at

“specific populations or health care settings, including youth, correctional facilities, and

American Indians/Alaska Natives”.4 SPNS also focus on methods of healthcare delivery, which

evolves with new technology, scientific discoveries, and behavioral and psychological studies.4

The Dental Reimbursement Program began in response to high rates of uncompensated care and

the ability for dentists to help with early detection and intervention of AIDS. The Minority AIDS

Initiative was incorporated to the Act in the 2006 reauthorization to address ethnic and racial

health disparities.

The 2006 reauthorization renamed the Ryan White CARE act the Ryan White HIV/AIDS

Treatment Modernization Act of 2006. The biggest changes made include the requirement that

“at least 75 percent of funds [for Parts A, B, and C] provide core medical services” and the

inclusion of TGAs.4 According to the Kaiser Foundation, “the program is the third largest source

of federal funding for HIV medical care in the United States after Medicare and Medicaid”.7

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Literature Review

The Journal of the American Medical Association recently published a study to

evaluate the performance and outcome differences between facilities receiving RWHAP

funding and non-RWHAP funded facilities. The study used a probability sample of 8,038 HIV

positive adults from 989 outpatient facilities. They estimate that 72.8% of adults receive

medical care from a RWHAP funded facility. Those who receive their care from RWHAP

facilities are more likely than those who receive care from non-RWHAP funded facilities to

be “younger, female, black or Hispanic, and born outside the United States, […] more likely

to have less than a high school education, have an income at or below the federal poverty

level, have no health care coverage, […] have been homeless or incarcerated” and are “more

likely to have major or other depression”.2

There were several differences in the services offered at RWHAP funded facilities and

non-RWHAP funded facilities. RWHAP funded facilities were more likely to offer on-site

case management (75% vs. 15.4%), on-site mental health and substance abuse services, and

support services for “patient adherence to HIV treatment”.2 The study found no significant

difference in the prescription of ART drugs, but did find that those who received care from

“RWHAP facilities were less likely to be virally suppressed”.2 When stratified by poverty

level and age at RWHAP facilities, they found that “persons at or below the poverty level and

those aged 30 to 39 years who received care were more likely to be virally suppressed”.2

A study published in 2011 looked at the rates and retention of viral suppression through

RWHAP by using data provided by the Ryan White Services Report (RSR). The study found that

“82.2% of clients who received RWHAP-funded HIV medical care were retained, and 72.6% of

clients […] achieved viral suppression”.7 These rates were not compared to those of non-

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RWHAP-funded facilities, but to projections made by the Centers for Disease Control and

Prevention and Gardner. In both cases they met or exceeded the expectation.

The researchers found several trends for viral suppression. Those over 65 years have the

highest rates of viral suppression at 80.3%. The reason for this is unknown but could be in part

due to survivorship bias.7 American Indians, Alaska Natives and African Americans “had lower

rates of viral suppression than other racial” and ethnic groups. They found that women had

higher levels of retention, but lower levels of viral suppression and “transgender individual

performed worse than men and women in retention and viral suppression”.7

In 2009, New York City launched their HIV Care Coordination Program (CCP) using

funding from Part A of the Ryan White Program. Their CCP targeted funds towards those who

were “newly diagnosed with HIV, never in care or lost to care for at least 9 months, irregularly in

care or often missing appointments, starting a new antiretroviral treatment (ART) regimen,

experiencing ART adherence barriers, manifesting treatment failure or ART resistance”.8 The

program measured patient engagement in care (EiC) and viral load suppression (VLS) one year

before implementation and one year after.

The CCP program used the funds to employ the following “evidence based or best-

practice programmatic elements: outreach for initial case finding and after any missed

appointment; case management; multidisciplinary care team communication; and decision

making via case conferences; patient navigation […]; ART adherence support […]; and

structured health promotion […]”.8 After one year, the program saw EiC and VLS improvements

in “nearly all subgroups examined”.8 The greatest increase in rates of VLS were found in those

who were “never in care or out of care for at least 6 months, as well as those newly diagnosed”.8

Among those who were previously diagnosed, the most significant changes were seen among

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“among low-income, uninsured, unstably housed, […] younger populations, [and] those with

lower CD4, unsuppressed VL, and/or no current prescription”.8

There is some debate concerning the current and future need of the RWHAP in light of

recent healthcare reforms, specifically the ACA. In June 2015, the American Journal of Public

Health published an article that looked at the history of the program and the implications of the

reform on HIV and AIDS funding. As part of their history review, they found that in 2012 “the

RWP’s AIDS Drug Assistance Program [provided] medication support to 46% of Americans on

antiretroviral treatment and more than half a million people receive at least 1 medical, health, or

related support service each year through the RWP”.3 As, of 2011, “two thirds [of recipients

were] poor, and three quarters [were] a racial/ethnic minority”.3 The following components of

the RWHAP are not funded through sources other than the RWHAP: “case management,

treatment adherence counseling, housing support and advocacy, […] legal services and advocacy

to help people newly diagnosed with HIV and AIDS access benefits, food and nutrition services,

dental services, transportation, peer support, risk reduction counseling, [and] some mental health

services”.3

With new regulations regarding pre-existing conditions, uninsured people living with

HIV/AIDS has decreased from 30% in 2013 to 25%.3 Even with the expansion of Medicaid

under the ACA many living in states that did not expand remain in the coverage gap. Many of

these states “are home to some of the most striking health disparities, particular for racial/ethnic

minorities, low-income people, and immigrants”.3 Even those with insurance coverage have

trouble affording their medications. The Ryan White Program provides services to 31% of

PLWHA that already have insurance.3 These services help PLWHA afford expensive HIV

medications and receive support services.3 In addition to these groups that still rely on the

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RWHAP for support and funding, many that do not meet the federal poverty level cut-off for

Medicaid are still too impoverished to afford these services and also rely on funding from the

RWHAP.3

Data Analysis

According to 2014 HRSA data, viral suppression in 2012 reached 75.1% and 82%

retention in care (Figure 1). Also in 2012, an estimated 60% of “people diagnosed with HIV in

the U.S. received at least one Ryan White HIV/AIDS Program-funded service” (Figure 2). The

data also show that 67% “of clients are at or below the Federal Poverty Level” and 89% “are at

or below 200% of the Federal Poverty Level” (Figure 3). These figures can be compared to the

national average for all PLWHA – only 25% of PLWHA are virally suppressed and only 33%

are prescribed ART (Figure 3).

The study published by JAMA found that two groups of PLWHA had greater rates of

viral suppression when attending a RWHAP facility compared to a non-RWHAP. The first group

is “at or below poverty level and in RWHAP facility” who have 73% viral suppression (APR =

1.09, p = 0.01) compared to those at a non-RWHAP facilities who have 67% viral suppression

(Figure 4). The second group is aged 30-39 years and in a RWHAP facility whom have 66%

viral suppression (APR = 1.17, p = 0.02) compared with those in a non-RWHAP facility who are

only 56% virally suppressed (Figure 4).

The study also found slightly lower rates of viral suppression among those who attended

RWHAP funded facilities (74.4%) compared to those who attended non-RWHAP facilities

(79.0%) (95% CI, p = 0.02) (Figure 5). However, RWHAPs serve a different demographic of

patients. Those who attend RWHAP funded facilities are more likely to have less than a high

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school education (26.1% vs. 10.9%), be at or below poverty level (53.6 vs. 23.9%), have no

health insurance for the past year (25% vs. 6.1%), be homeless (9.9% vs. 4.8%), and be

incarcerated (5.4% vs. 2.7%) (95% CI, p = 0.001) (Figure 5).

The 465 newly diagnosed PLWHA in the NYC CCP had the highest VLS rates at 66%

(95% CI). The largest increase in VLS among the previously diagnosed occurred in those who

were currently out of care with an increase from 0% to 50% (95% CI) (Figure 6). There were

several significant changes seen among those who were previously diagnosed (Figure 7).

Another substantial increase in VLS occurred among the 787 people who were “not taking ART

at enrollment” that increased their VLS from 11.7% to 44.5% (RR = 3.80 [95% CI]). Those

under the age of 24 and those between 25 and 44 had lower overall rates of VLS but greater

changes in rates compared to other age groups. The 153 under 24 years of age increased from

19.6% to 35.9% (RR = 1.83, [95% CI]) and the 1,297 between 25 and 44 years increased from

26.0% to 48.8% (RR = 1.88, [95% CI]). Among the 726 homeless, VLS rates increased from

22.2% to 38.3% (RR = 1.73, [95% CI]). The 789 uninsured increased VLS rates from 28.1 to

48.4 (RR = 1.72, [95% CI]). Of the 1,213 whose household income is below $9,000, VLS

increased from 28.9% to 49.2% (RR = 1.70, [95% CI]).

The study that examined rates of retention and viral suppression found that the majority

of RWHAP clients are uninsured (between 25.4% and 31.5%) or have Medicaid funding

(between 24.7% and 23.3%) (Figure 8). Based on the Ryan White Services Report, in 2011

72.6% of PLWHA achieved viral suppression. Of those how were retained in the program,

77.7% reached viral suppression (OR 2.49, p = <.001, 95% CI). Of those who were not retained,

58.3% reached viral suppression (Figure 9).

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The Los Angeles Ryan White Program assessed the characteristics of its population and

found that 73% were virally suppressed and 83% were retained in care. Similar to RWHAPs

around the country, the majority of patients in the LA program also had no insurance (60%). This

is followed by 34% with public funding and 6% private funding (Figure 10). Continuing to

follow national trends, 65% of the patients lived at or below the FPL (Figure 10).

Discussion

National rates of viral suppression among all people living with HIV/AIDS remains low

around 25%, yet the RWHAP has been able to acheive rates around 75% according to HRSA.1

The Los Angeles program reached 73%6 viral suppression and a study published in JAMA found

national rates around 74%.2 Viral suppression rates for PLWHA in other programs are generally

slightly above those for RWHAPs at around 79%.2 Although the rates of viral suppression are

lower, the RWHAP shows great success at providing care and support to PLWHA that would

otherwise have little or no access to services. Many RWHAP recipients have no insurance (25%)

compared to non-RWHAP recipients (6%).2 The majority of recipients are at or below the federal

poverty level (53%) compared to (24%) non-RWHAP facilities.2 Recipients are also less likely

to have a high school education (26%) in comparison to non-RWHAPs (11%).2 Even with the

additional struggles the majority of recipients face, the RWHAP is still able to create rates of

viral suppression similar to those of non-RWHAPs.

There are two groups that perform better than non-RWHAPs in rates of viral suppression.

For those who are at or below the federal poverty level the RWHAP has 73% viral suppression

compared to non-RWHAPs at 67%.2 The age category 30-39 also outperforms non-RWHAPs

(66% vs. 56%).2 The NYC CCP program identified several groups that present the great

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opportunity for improvement in viral suppression. Those who are newly diagnosed or not in care

have the potential to decrease their viral load more than any other category or group. Newly

diagnosed patients in the NYC CCP increased the rates for viral suppression from 0% to 66% .8

These patients present a valuable area to direct funds to dramatically reduce the ability to spread

the virus. The NYC CCP used funds from the RWHAP to fund their delivery method. This

method may be beneficial to other EMAs to increase viral suppression.

Those who had previously been diagnosed, but had been out of care showed a substantial

50% increase in suppression.8 Those who were not taking ART medications to reduce viral load

were able to increase suppression from 11.7% to 44.5% demonstrating a need to target those not

currently in care.8 Retention in the RWHAP is highly correlated with viral suppression at 77.7%

vs. 58.3%, which further justifies the additional services provided by the RWHAP that are

intended to increase retention rates.7 The RWHAP uses its five parts to increase medical and

support services that promote the health of the PLWHA and help to reduce their viral load to

limit the spread of the virus.

Conclusion

The Ryan White HIV/AIDS Program differs from non-RWHAPs in several ways –

primarily in the demographic of their recipients and by their services offered. Despite the

obstacles faced by the majority of the recipients, the RWHAP has been able to achieve rates of

viral suppression similar to non-RWHAPs. Their great achievements may be largely due to their

diverse and extensive services provided to PLWHA. The RWHAP is significantly more likely

than non-RWHAPs to offer case management, on-site mental health and substance abuse

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services, and medication adherence support.2 These services help to increase patient retention,

which is strongly correlated with viral suppression.

In 2012, the RWHAP comprised 16% of the total federal funding for HIV/AIDS.3 With

healthcare reforms brought by the ACA, more PLWHA are now covered by health insurance –

either because their pre-existing condition no longer limits their ability to obtain coverage or they

are now covered through Medicaid. While, these improvements go a long way to increase

coverage for those living with HIV/AIDS, even with insurance coverage HIV medications are

still unobtainable for some. Furthermore, insurance coverage does not generally provide the

extended services that are provided through the RWHAP. The reforms in healthcare may

decrease the amount of services some patients receive through the RWHAP, but this does not

eliminate the need for the program. Instead, funds should be reallocated to address changes in

need. Perhaps funds would be better served in areas that did not expand Medicaid or to further

increase the affordability of HIV medications. The RWHAP has been successful through its

lifetime - when little was known about AIDS, through the introduction of HIV medications, and

now with adjustments to funding allocation it will continue to be successful through the changes

in healthcare.

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Appendix

Figure 11

Figure 21

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Figure 31

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Figure 42

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Figure 52

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Figure 68

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Figure 78

Continued

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Figure 87

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Figure 97

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Figure 106

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References

1 U.S. Department of Health and Human Services, Health Resources and Services Administration, & HIV/AIDS Bureau. (2014). The Ryan White HIV/AIDS Program Highlights 2014: Striving for an AIDS-Free Generation. AIDS-Free Generation 2014 Ryan White HIV/AIDS Progress Report. Retrieved from https://docs.google.com/viewer?url=http%3A%2F%2Fhab.hrsa.gov%2Fdata%2Ffiles%2F2015report.pdf

2 Weiser J, Beer L, Frazier EL, et al. (2015). Service Delivery and Patient Outcomes in Ryan White HIV/AIDS Program–Funded and –Nonfunded Health Care Facilities in the United States. JAMA Intern Med, 175(10), 1650-1659. doi:10.1001/jamainternmed.2015.4095.

3 Cahill, S. R., Mayer, K. H., & Boswell, S. L. (2015). The Ryan White HIV/AIDS Program in the Age of Health Care Reform. American Journal of Public Health. 105(6). 1078-1085.

4 Rothman, Lily. (2015). How One Teenager Changed the Way the World Sees AIDS. TIME. Retrieved from http://time.com/3763875/ryan-white-history/

5 Health Resources and Services Administration. A Living History: The Ryan White HIV/AIDS Program. HRSA. Retrieved from http://hab.hrsa.gov/livinghistory/timeline/toward_passage.htm

6 Sayles, J. N., Rurangirwa, J., Kim, M., Kinsler, J., Oruga, R., & Janson, M. (2012). Operationalizing Treatment as Prevention in Los Angeles County: Antiretroviral Therapy Use and Factors Associated with Unsuppressed Viral Load in the Ryan White System of Care. AIDS Patient Care & Stds, 26(8), 463-470. Doi: 10.1089/apc.2012.0097

7 Doshi, R., Milber, J., Isenber, D., Matthews, T., Malitz, F., Matosky, M., & … Cheever, L. (n.d). (2011). High Rates of Retention and Viral Suppression in the US HIV Safety Net System: HIV Care Continuum in the Ryan White HIV/AIDS Program. Clinical Infectious Diseases, 60(1), 117-125.

8 Irvine, M. K., Chamberlin, S. A., Robbin, R. S., Myers, J. E., Braunstein, S. L., Mitts, B. J., & … Nash, D. (2015). Improvements in HIV Care Engagement and Viral Load Suppression Following Enrollment in Comprehensive HIV Care Coordination Program. Clinical Infectious Diseases, 60(2), 298-310

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