State of HIV/AIDS in Arkansas

HIV Arkansas, is constantly presented with an opportunity to advance and grow both in services and in advocacy. Over the past few months we have experienced growth that has fueled the desire of many members to becomes more involved and more pro-active than ever before. Each passing day becomes a clarification point as our purpose and resolve become a living example of how successful we can be when working together for a common good. In 2009 we have made some great strides in providing educational services through our monthly newsletter and our Positive Living support meetings. IN addition we have implemented a working Board of Directors and have engaged in life-changing advocacy work that will be visible for years to come as we  put a face to HIV/AIDS and speak out against the ignorance and avoidance of facing the facts that HIV is not going away, but becoming a severe epidemic in the southern states. This article is rather lengthy, but well worth the time to read the facts about HIV and the state of Arkansas. Thanks to Thomas Markham for compiling this concise information for the article.

(The following figures derived from ADH, CDC, HRSA, Kaiser Family Foundation web sites.)

Statistics

• Worldwide People living with HIV/AIDS in 2008 – 33.4 million estimated – half women, 2.1 million children
• AIDS deaths in 2008 – 2.0 million
• In 2007, the estimated number of persons diagnosed with AIDS in the United States and dependent areas was 37,041

The South in general is at the epicenter of the current HIV epidemic in the United States, with: 

• the highest rates of new infections, 
• the most AIDS deaths,
• the greatest number of people living with HIV/AIDS,
• the largest percentages of persons with HIV who are not in care, and the fewest resources.

Arkansas

Arkansas has one of the highest rates in the country of people living with HIV/AIDS not receiving regular medical care- nearly 70%; this is twice the national average & higher than surrounding states.

Arkansas receives the least amount of federal HIV/AIDS funding of any southern state. Other than the state match for those Arkansans living with AIDS who receive Medicaid, Arkansas does not contribute any state funds for HIV/AIDS programs.

Arkansas revenue and appropriations policies make it one of the most inhospitable states in the nation for people living with HIV/AIDS. Arkansas provides zero state funds for HIV/AIDS care.

While the state does maintain the HIV/STD/Hepatitis C Section within the Department of Health and has HIV-positive individuals on its Medicaid rolls, no state dollars are dedicated to the AIDS Drug Assistance Program or any other HIV-specific program. This is the lowest state contribution in the nation.

Arkansas has regional demographic & economic differences that create unique prevention, care, and service needs.

Northwest Arkansas  is more affluent and more White than the rest of the state but also has sizeable Marshallese and Hispanic populations, who need culturally and linguistically appropriate interventions.

The Delta region, with a larger African American population, suffers high levels of poverty and unemployment, having more in common with other Deep South Delta states than it does with NWA.

The differences between more urban and rural areas demand different approaches to education, prevention, and care.

HIV/AIDS numbers in Arkansas

• Each year about 350 Arkansans are diagnosed with HIV and 200 more are diagnosed with full-blown AIDS.
• Currently, in 2009, reportedly 5,630 Arkansans are living with HIV/AIDS. Many more are likely infected but are not reported because they don’t get tested largely because of fear of stigma.
• HIV/AIDS cases reported as of December 31, 2007 in NWA District 2 were a total of 1,104 – an average 6.3% increase in reported HIV cases from 2006.
• Carroll County – one of top 10 counties with the highest HIV rates, Benton County – one of top 10 counties with the highest AIDS rates.
• ADH HIV/STD/Hep-C Service District 2 includes 17 counties covering NWA
  • Washington County – 383 cases
  • Sebastian County – 243 cases
  • Benton County – 145 cases
  • Faulkner County – 72 cases
  • Crawford County – 51 cases
  • Pope County – 50 cases
  • Carroll County – 49 cases
  • Boone County – 20 cases
  • Conway County – 20 cases
  • Yell county – 15 cases
  • Franklin County – 13 cases
  • Logan County – 11 cases
  • Newton County – 11 cases
  • Madison County – 8 cases
  • Johnson County – 6 cases
  • Scott County – 5 cases
  • Perry County – 2 cases
• 1,196 Arkansans have died of AIDS so far. The rate of deaths per 100,000 in Arkansas is significantly above the national target of reducing AIDS deaths to 0.7 per 100,000:
  •  2.0 among Whites
  • 10.8 among African Americans
  •  2.5 among Latino

People living with HIV in Arkansas are substantially more likely to receive a concurrent AIDS diagnosis (32%), progress to AIDS within 12 months (46%), or to die within 12 months of a diagnosis (5%). Because it typically takes 10 years for HIV disease to progress to AIDS, these statistics indicate that many Arkansans are being diagnosed and entering care in extremely late stages of their illness. Arkansas is nearly double the national average in these categories and significantly higher than other states in the region.

ADAP (AIDS Drug Assistance Program) provides certain HIV-related medications to some people with HIV/AIDS who do not have or have only limited coverage under Medicaid, Medicare, or private insurance. 

In fiscal year 2008, Arkansas’ ADAP budget was $4,245,310, all of which was federal funding allocated under a Ryan White Part B ADAP earmark.

Because of inadequate resources and steeply increasing need, financial eligibility for ADAP was cut twice in 2009, first from 500% of the Federal Poverty Level to 200% in May 2009, then to 150% in November 2009.ii—effectively barring any individual with income above $16,000 per year from benefits.  After not having had a waitlist for ADAP since 2006, Arkansas reinstituted a waitlist in the fall of 2009. Still the state of Arkansas contributed no state dollars into its ADAP program.

In the fiscal year 2008 Arkansas received $9,644,768 in funding under the Ryan White Program for primary medical care, HIV related medications, mental health treatment, substance abuse treatment, oral health, case management, and support services.

Because of limited resources and increasing demand, the Arkansas Department of Health cut the financial eligibility level for Ryan White services from 500% FPL to 150% FPL in 2009.

Medicaid recipients in Arkansans are offered an extremely limited benefits package.  Medicaid covers a maximum of:

·          12 hospital outpatient visits

·          12 office visits

·          1 basic family planning visit

·          3 periodic family planning visits.

For most adult beneficiaries there is a maximum of $500 in lab and x-ray services and a maximum of 24 inpatient hospital days per year.

Adult beneficiaries outside of nursing homes are limited to 3 pharmaceutical prescriptions, including refills, per month.  Extensions may be granted for a maximum of 6 prescriptions per month for beneficiaries at risk of institutionalization.

Medicaid prescription limits are particularly challenging for people living with HIV/AIDS because of their significant medication requirements.  Additionally, the new eligibility requirements specifically bar any individual on Medicaid from participating in ADAP.

While Arkansas Medicaid does offers Home and Community Based Services through a waiver program, there is a significant waitlist for the services. The program does not have a category for those living with HIV/AIDS.

The end result of these restrictions is that people living with HIV/AIDS must be either extremely poor or significantly disabled by their disease to qualify for Medicaid coverage.

The narrow eligibility along with the limited benefits of individuals who do qualify  will drive a significant number of uninsured or underinsured individuals to the emergency room for care.

This care is often significantly more expensive for individuals, the state, and, ultimately, consumers of healthcare that have insurance.  Uncompensated care for the uninsured represents a multi-billion dollar “hidden health tax” of $1,500 per year on every Arkansan with health insurance.

The lack of coverage and benefits  contributes to Arkansas’  significantly high than the national percentage of unmet need for those living with HIV, its high and rapid rates of AIDS diagnosis for HIV-positive individuals, and its high and rapid death rate for newly diagnosed individuals.

Given such high system-wide costs arising (in part) from the restrictions in the state’s Medicaid program, the most obvious solutions are to expand eligibility and benefits.  There would be a high up-front cost of such an action that could make it difficult, but such an expansion could drastically improve hundreds of thousands of lives and save Arkansans billions per year in premiums and tax revenue.  

Arkansas is in a better position than many other southern states to deal with HIV/AIDS. Arkansas’ HIV and AIDS total case numbers are lower than other southern states, presenting Arkansas with the important opportunity to take action and take control of the situation before it gets worse.

Numerous research studies and common sense suggest that preventing HIV and providing early access to treatment are cost effective. Prevention and early treatment preserve productivity, prolong health, and help avoid more costly interventions, such as hospitalization and emergency room visits.

Through reorienting taxation priorities or setting a dedicated revenue stream for health programs, Arkansas could significantly improve HIV/AIDS care in the state.  

Governor Beebe has touted his ambitious Healthcare initiative that is to be funded primarily through an estimated $87 million in new revenue from the new tobacco tax… yet of the estimated $89.9 million in proposed healthcare

initiatives, projects and programs not one cent is earmarked for HIV/AIDS.

In 2007 the Arkansas state legislature passed a bill (H.B. 2615) creating an HIV/AIDS Minority Task Force to examine the HIV/AIDS pandemic and its specific effects on minority communities, and make recommendations for HIV/AIDS prevention and treatment. In January, 2008, Governor Mike Beebe appointed seventeen individuals from across the state of Arkansas, all actively involved in the fight against the spread of HIV/AIDS, to serve on the Task Force.

 In November 2008, the Task Force published a report making such recommendations The report makes a dozen different recommendations to effectively meet the need of those living with HIV/AIDS in Arkansas, especially those in communities of color that are increasingly disproportionately affected.

Build/strengthen coalitions among community/faith based organizations, state agencies and other entities focusing on HIV/AIDS awareness and prevention.

Expand the newly established Arkansas HIV/AIDS Prevention Coalition throughout counties in Arkansas.

The Arkansas HIV/AIDS Minority Task Force proposes that a comprehensive and accessible method for exchanging ideas and information among community/faith based organizations, governmental and state entities include activities such as data collection, dissemination of information, monitoring and evaluation. The plan will include a directory of HIV/AIDS prevention services. This information will be compiled in a database of HIV/AIDS Prevention Services and made available to agencies and organizations providing HIV/AIDS prevention services and other interested individuals. A hard copy of this directory will be made available and not limited to the following entities: State correctional facilities, state agencies, hospitals, DHS offices, workforce centers, county libraries and Black churches throughout the State of Arkansas. A web page with various links to entities such as the Arkansas Minority Health Commission, Arkansas Department of Health, UAMS, Centers for Disease Control and statewide community/faith-based organizations who provide HIV/AIDS prevention services will include national, regional, state and local announcements of events and activities of scheduled conferences, forums, seminars and workshops focusing on HIV/AIDS prevention service activities.

The Arkansas HIV/AIDS Minority Task Force recommends assessing the needs of prevention and treatment programs within minority communities and identifying existing resources that are available within minority communities. The HIV/AIDS Prevention Services Directory will serve as the primary tool and will be updated when necessary.

The Task Force recommends that all newly diagnosed individuals with HIV/AIDS and all those existing infected patients who desire this service be afforded the opportunity to attend at least one HIV/AIDS training course/workshop that will provide information concerning all available services, both treatment and otherwise, within their respective communities. This service can possibly be made available through Ryan White or jointly in collaboration with UAMS, Arkansas Department of Health and the Arkansas Minority Health Commission.

The Task Force strongly recommends that all eligible patients be assured accessibility to these workshops. For this to become a reality, it will be necessary for this service to be made available in at least one location in each of the four Congressional Districts in Arkansas. It is recommended these training courses/workshops be set up and organized as soon as funds are available. This service as well as transportation to training course/workshops can possibly be made available through Ryan White or jointly in collaboration with UAMS, Arkansas Department of Health and the Arkansas Minority Health Commission.

The Arkansas Department of Corrections has an HIV prevention program that includes monthly education sessions, testing, services and care for those found to be infected, referrals to the Ryan White Consortiacare, and penalties for non adherence to treatment plans upon release. While there are programs provided during incarceration, the Task Force recommends that similar programs be implemented at the community level to continue this prevention service.

Conduct Public Forums in each of the four Congressional Districts that will engage a wide range of community leaders to discuss and design education programs for the public. These Public Forums will be communicated to the public using the following: flyers, public service announcements (English and Spanish), “Save the Date” cards, information to school systems to encourage parents in communities, information to area Chambers of Commerce and the Governor’s office media sources.

To implement these recommendations to make meaningful progress in the fight against HIV/AIDS, however, will require a greater commitment and investment from the state…

2009 did see the  creation of the Consumer Advisory Board by ADH, doing better at seeking input from consumers and involving them in decisions about the systems of care that directly affect them. ADH could also explore the possibility of creating a Consumer Office, staffed by a person living with HIV/AIDS, within the HIV/STD/Hepatitis C Section as some other states have done. The primary advantage of an internal Consumer Office is that the perspective and experience of a person living with HIV/AIDS and representing consumers would be incorporated into the day-to-day operations and decisions of the Section.

2010 may also see the creation of a Services Advisory Board that would presumably consist of a combination of community-based service providers & case managers as well as HIV+ consumers to advise the ADH and State Government.

Things to do:

1.  Contact your state representatives and impress on them that allocating funding for HIV/AIDS prevention education, adequate medical care and treatment will both save lives and save Arkansas millions of dollars each year as earlier access to medical care either through Medicaid or Ryan White Funding can actually reduce costs, as people with earlier access to care stay healthier longer, and can avoid more expensive medical interventions.

Home and Community Based Services (HCBS) can be critical for many consumers of care.  Arkansas has a waiver to provide HCBS under Medicaid, but does not list HIV positive individuals as an eligible category. Tell state expanding the eligibility for people living with HIV/AIDS could significantly improve access to Medicaid and health outcomes. The state should roll back the ADAP cuts and request federal funding or commit some state resources to cover the added cost.

Arkansas should ask for a waiver to cover targeted case management for people living with HIV/AIDS.  The state offers targeted case management for youth, children, the elderly, pregnant women, and individuals with disabilities.  HIV is a severely debilitating disease that requires significant regular care and treatment management.  Arkansas should follow Alabama’s lead to cover case management for HIV positive individuals through Medicaid.

2. Expand ARHealthNetworks, an innovative state effort to expand coverage to previously uninsured individuals that could be expanded to make up for deficiencies in the core Medicaid program.  

The program was designed to allow employers who had not previously provided health insurance to their employees to provide a “safety net” benefit package through a public-private partnership. The program covers workers at or below 200% FPL at businesses with under 500 employees that have not had a health plan for more than one year—a significantly more expansive eligibility criteria than traditional Medicaid (17% FPL). The plan’s benefits are less generous than the core Medicaid package, but it does prohibit denial of coverage for preexisting conditions and helps subsidize premiums.  Despite its deficiencies and narrow enrollment, ARHealthNetworks demonstrates a meaningful effort to expand coverage to low-income and difficult-to-insure Arkansans.  Expanding the program to more employers or part time workers or improving the benefit package could significantly improve coverage and public health in Arkansas.

3. Ask Arkansas’ members of Congress to cosponsor and actively support ETHA (The federal Early Treatment for HIV Act) as part of national health reform.

Members of Congress from Arkansas should be encouraged to support an “ADAP as TrOOP” which stands for “true, Out of Pocket” provision in national health reform legislation. Medicare Part D prescription coverage has a coverage gap (known as the “donut hole”), in which Medicare recipients must pay 100% of the cost of their medications out of pocket. Arkansas’ ADAP pays for medications for its enrollees in the donut hole.  Current federal law prohibits counting ADAP contributions towards recipients’ “true out-of-pocket” costs (TrOOP). Without being able to count the ADAP contributions, enrollees remain stuck in the donut hole and never reach the other side of the coverage gap—the “catastrophic coverage” level where the federal government pays 95 percent of prescription costs. Thus, the donut hole becomes a black hole, with ADAP paying the entire cost of medications. Current national health reform legislation includes “ADAP as TrOOP” language, which would allow ADAP contributions to count as recipients’ out-of-pocket costs. This would enable more enrollees to reach the other side of the coverage gap, and free up some ADAP resources to assist more low-income people living with HIV/AIDS.

4. Provide culturally and linguistically competent services in order to reach cultural and linguistic minority communities effectively with prevention education. 

To engage them in care, providers need culturally and linguistically competent staff. Many providers in Arkansas lack this capacity. One notable exception is the Community Clinic in Springdale, in Northwest Arkansas, which is developing effective outreach programs to the local Marshallese and Hispanic communities. The Clinic employs staff members who come from these communities, and tailors outreach programs to the cultural needs and sensibilities of the communities. By “meeting patients where they are,” the Community Clinic is engaging these populations in prevention and care. Cultural competence training is needed is for providers working with lesbian, gay, bisexual, and transgendered (LGBT) communities. 

5. Implement comprehensive, science-based health education: Arkansas does not mandate either sex or HIV education in schools—if sex or HIV education is provided, it must stress abstinence and is not required to discuss contraception.

From 2005 to 2006, the teen birth rate in Arkansas increased 5%, and Arkansas ranked 4th among U.S. states in 2006 for number of teen births.1 Arkansas also has relatively high rates of sexually transmitted infections. Given Arkansas’ teen birth rate it is obvious many adolescents are sexually active. The lack of comprehensive, science-based sex and health education (including information about HIV/AIDS) misses an important opportunity for HIV, STD, and pregnancy prevention, and means that Arkansas youth are not provided with potentially life-saving information.

Despite some progress, stigma, discrimination, fear, and ignorance about HIV remain widespread in Arkansas. HIV/AIDS stigma is a multi-faceted and nuanced phenomenon that can manifest in many different ways and is inextricably intertwined with other forms of discrimination, including racism and homophobia.

Stigma experienced in family and social settings, as well as the perception that the public harbors widespread fear and negativity towards people living with HIV/AIDS, may lead to greater secrecy and isolation on the part of those living with the virus. This can hinder prevention and education campaigns and efforts to link people living with HIV/AIDS with healthcare and services. Stigma also undermines public education about HIV by discouraging people living with the virus from disclosing their status and participating in education efforts.

The Department of Health working with the Consumer Advisory Board and the Minority Health Commission should be the lead government agencies in educational initiatives. The HIV/AIDS Minority Task Force has proposed involving local community leaders in designing education programs about HIV; to develop educational messages that respect community mores while communicating factually accurate information about HIV/AIDS. In addition to education for the general public, more specialized education for healthcare providers and people working in healthcare facilities is needed. This could include information reviewing universal precautions and discussing the damaging effects of stigma. Wherever possible, people living with HIV/AIDS should be part of educational efforts. This can help personalize the issue, break down stigma, fear and prejudice.

The most immediate challenge facing people enrolled in Arkansas’ AIDS Drug Assistance Program (ADAP. The combination of reduced federal funding and significantly increased enrollment (up 54% from 2008 to 2009) led ADH to announce the ADAP eligibility cuts. ADAP enrollees scheduled to be cut from the program have been encouraged to apply to pharmaceutical companies’ patient assistance programs (PAPs), but providers report that not all clients will be eligible for these programs. It is highly likely that some clients will lose access to their medications, a situation that has serious implications for both individual and public health. HIV treatment regimens are complex, and require consistent adherence. Without continuous access to medications, patients can become non-responsive to their treatment and develop drug-resistant strains of HIV. While ADH will apply for competitive federal supplemental ADAP funding in 2010, the underlying issue of the lack of any state contribution for ADAP remains.

If you are interested in helping with our advocacy work, there is always plenty to do. Visit with us after one of our socials, during one of our board meetings and get involved.

Making a difference begins with you and I.

Face it: HIV is a real issue!