Oral Health and HIV Policy – a Journey

1. Oral Health and HIV Policy – a Journey David A. Reznik, D.D.S. Chief, Dental Service- Grady Health System President, HIV Dental Alliance (HIVdent.org)

2. The Journey Begins – June 5, 1981

3. Timeline • 1981 • The first cases are among gay men, then injection drug users. • 1982: • AIDS is reported among hemophiliacs and Haitians in the USA. • The name “AIDS” – Acquired Immune Deficiency Syndrome – is created. • 1983 • AIDS is reported among non-drug using women and children. • Experts become more confident that the cause of AIDS is infectious. • Three thousand AIDS cases have been reported in the USA; one thousand have died.

4. Timeline • 1984 • Scientists identify HIV (initially called HTLV-III or LAV) as the cause of AIDS. • 1985 • An HIV test is licensed for screening blood supplies • Ryan White, a teenage hemophiliac, was denied the ability to return to school after a hospitalization and AIDS diagnosis. • 1986 • The Surgeon General’s Report on AIDS is released. • First AIDS Service Demonstration Grants released by HRSA • Ryan White attends 8th grade, however the school required him to use disposable eating utensils, separate bathrooms, and waived his gym requirement. • 1987 • AZT is the first drug approved for treating AIDS. • The White family leaves their hometown and Ryan starts at Hamilton Heights High School in Cicero, IN

5. Timeline • 1987: AZT Program Launches With Awards of $30 Million • 1988: HRSA Institutes Pediatric AIDS Service Grants • 1988: Researchers discover that almost all cases of HIV infection ultimately lead to AIDS. • 1988: The American government conducts a national AIDS education campaign. • Ryan White speaks before the President’s Commission on HIV about the discrimination he faced when he tried to return to school and how education on the disease made him welcome in Cicero

6. Surgeon General’s Report on AIDS – 10/22/86 • Dr. Koop developed the Surgeon General’s Report on AIDSand released on October 22, 1986. • In his introduction to the Report, Dr. Koop famously cautioned against the terrible stigma associated with the disease, writing: “We are fighting a disease, not people. Those who are already afflicted are sick people and need our care as do all sick patients. The country must face this epidemic as a unified society. We must prevent the spread of AIDS while at the same time preserving our humanity and intimacy.”

7. HRSA Funds First AIDS Program at $15.3 Million - 1986 • The AIDS Service Demonstration Grants marked HRSA’s first AIDS-specific health initiative. It made funds available to four of the country’s hardest-hit cities in its first year: New York, San Francisco, Los Angeles, and Miami. • “Those of us working in public health at the time,” says Richard Schulman, “realized that communities didn’t have the resources to respond.With the AIDS Service Demonstration Grants, we were finally able to jump into the fray.” • The number of AIDS Service Demonstration grantees grew significantly over the 5-year period in which the program was funded, from 4 in 1986 to 24 in 1990. The increase in the level of funding, however, grew an insignificant 7 percent.

8. Understanding AIDS – a call for a National AIDS Strategy in 1988! • As a follow up to the report, Dr. Koop launched the U.S.’s first coordinated HIV/AIDS education campaign by mailing a booklet, Understanding AIDS, to all 107 million households in the United States in 1988. It remains the largest public health mailing ever done. • In his writings and public speeches, Dr. Koop called for early sex education, urging parents and schools to start frank, open discussions about AIDS and condom use, presaging the call of the National HIV/AIDS Strategy for age-appropriate HIV education across the lifespan.

9. Trends in Annual Rates of Death due to the 9 Leading Causes among Persons 25−44 Years Old, United States, 1987−2009 Note: For comparison with data for 1999 and later years, data for 1987−1998 were modified to account for ICD-10 rules instead of ICD-9 rules.

10. Signing of the Americans with Disabilities ActJuly 26, 1990

11. The Americans with Disabilities Act (AwDA) July 26, 1990 • Is a comprehensive federal law aimed at eliminating discrimination against people with disabilities, including people with HIV. • Extended disability discrimination protection to private places of public accommodation. • Provides “a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities”.

12. AwDA Title III 1. Deny an HIV-positive person the “full and equal enjoyment” of dental services or to deny an HIV-positive person the “opportunity to benefit” from dental services in the same manner as other patients. 2. Establish “eligibility criteria” for the privilege of receiving dental services. These criteria tend to screen out persons who have tested positive for HIV. Provide “different or separate” services to patients who are HIV positive or fail to provide services to patients in the most “integrated setting.” 4. Deny equal services to a person who is known to have a “relationship” or “association” to a person with HIV, such as a spouse, partner, child, or friend. As it applies to dentistry, it is illegal to:

13. The Supreme Court ruling that included HIV, non-AIDS, in the AwDA involved a dentist and a patient

14. ADA friend of the court in the Abbott V Bragdon Case • Answered the Supreme Courts questions on the scientific basis of ADA policy • Emphasized that “the risk of occupationally acquiring HIV infection through practice of dentistry is so low as to be almost undetectable” • Sent the right and just message.

15. In support of Abbott – an exceptional example of coalition building! • Medical: AMA, ANA, Infectious Disease Society, Pediatric AIDS Foundation, Council of State and Territorial Epidemiologists, AADS,ASTDD, and more • Public Health: APHA, and more • Governmental: Solicitor General of the U.S., Congressional Sponsors of the AwDA • Civil Rights: ACLU, AARP, AMFAR, Georgetown Univ. Law Center, AIDS Action Council, National Council of Jewish Women, Council of Churches of Christ, Evangelical Lutheran Church in America, American Hebrew Congregations, and more

17. Procedures performed by dentist after his AIDS diagnosis No other confirmed exposures to HIV HIV strain similar to dentist and to each other HIV Transmission to 6 Patients in a Dental Practice, U.S.

18. The Impact of the Acer Case • A famous case in which an HIV-positive Florida dentist infected six of his patients in late 1987 caused great alarm. It is the only case in which a dental health care professional is known to have infected even one patient with the AIDS virus, but caused great concern in the dental profession. • Dr. John Greenspan says the AIDS epidemic contributed to three major changes to the dental industry.

19. Dentistry’s response to HIV (John Greenspan) • “The first is standardized universal infection control,” he said. “Dentists had to upgrade their facilities so that hand pieces could be sterilized. Light handles were covered, using gloves became standard, and suction equipment filters were upgraded.” • The second major change, according to Greenspan, was rights of HIV patients to receive treatment. • “It was still not universally accepted but legally verified rights of people with AIDS to get dental care,” he said. “And that was a fight. It didn’t happen casually. And in some countries, there’s still stigmatization involved, but that was a huge change in the U.S.” • “The right of an HIV-positive health care worker to practice, with some narrow exceptions for surgeons and others in the operating room,” Greenspan said. “Basically an HIV-positive individual under guidance from experts can practice in most jurisdictions.”

20. Ryan White(12/6/71 – 4/8/90) Ryan White was diagnosed with AIDS at age 13. He and his mother Jeanne White Ginder fought for his right to attend school, gaining international attention as a voice of reason about HIV/AIDS. At the age of 18, Ryan White died on April 8, 1990, just months before Congress passed the AIDS bill that bears his name – the Ryan White CARE (Comprehensive AIDS Resources Emergency) Act.

21. CARE Act Passes Both Houses by Wide Margins – August 18, 1990 • On August 18, 1990, by wide bipartisan margins, both houses of Congress passed the groundbreaking Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, named for an Indiana teen who lost his life to AIDS. By the time the bill became law, more than 150,000 U.S. AIDS cases had been reported in the United States. More than 100,000 had died.*

22. At the time, the CARE Act was—and remains today—unique among the Nation’s health care programs. • The CARE Act is one of only a few disease-specific health programs in the country • The 1990 legislation required that people living with HIV/AIDS (PLWHA) be involved in implementing the Title I (Part A) Program for Eligible Metropolitan Areas, the largest CARE Act program at the time. Consumers were also involved in implementing the Title II (Part B) program for States and Territories. • The CARE Act is a discretionary budget program and, unlike Medicaid and Medicare, not an entitlement. The availability of funds is contingent on the Federal budget. • The CARE Act intent is that funds be used to serve PLWHA who are low income, are un- or underinsured, or otherwise lack the resources to access services on their own. Thus, the CARE Act was, and still is, the payer of last resort; funds could not be used to supplant other resources.

23. Ryan White HIV/AIDS Program - Intent • Increase access to care for people living with HIV disease domestically • Safety net for uninsured and under-insured low-income individuals living with HIV/AIDS • Funding for: • Primary health care including oral health care, medications and support services • Provider training, technical assistance, demonstration projects (SPNS)

24. Ryan White HIV/AIDS Program Structure • Cities (Part A) • States and Territories (Part B) • AIDS Drug Assistance Program (ADAP) • Health Care Agencies • Early Intervention Services and Capacity Development (Part C) • Women, Infants, Children and Youth (Part D) • Part F • Dental Programs • Dental Reimbursement Program • Community-Based Dental Partnership Program • AIDS Education/Training Programs • SPNS research/demonstration projects

25. Ryan White HIV/AIDS Programs • 75% of funding in Parts A, B and C must be spent on Core Services: • Primary Care • Medications • Oral Health Care • Mental Health Care • Substance Abuse Services • Medical case management/treatment adherence counseling • Other services such as food, transportation, peer counseling, translation, etc. are considered support services

26. RW Clients’ Income • Most RW clients are below 100% FPL • Data is not available for clients <133% FPL Missing/unknown values (20%) excluded. Source: 2010 RW Services Report- Preliminary Data

27. RW Clients’ Insurance Status • 25.5% of RW clients are uninsured • 28.7% have Medicaid • 9.3% have Medicare • 12.7% have multiple insurances – Dual eligible • Remainder are underinsured, with RW providing coverage completion to provide a full compliment of services Missing/unknown values (18%) excluded. Source: 2010 RW Services Report- Preliminary data

28. Ryan White HIV/AIDS Program - Clients Served • Serves over 529,000 uninsured and underinsured persons affected by HIV/AIDS annually • Approximately 208,809 people received medications through ADAP in 2010 • About 46% of those on ARVs in U.S. use ADAP services • Reaches those most in need, with an estimated 72% racial minorities, 31% women, and 81.6% uninsured/underinsured or receiving public health benefits (Source: RW Data Report, 2010) • CDC reported AIDS cases- 66.5% minority, 23.5% women • Reduced disparities in HIV care and treatment outcomes attributed to RW program (Saag, CID, 2012)

29. Ryan White Dental Programs • Funds from all Ryan White HIV/AIDS grant programs can support the provision of oral health services. • Two programs, however, specifically focus on funding oral health care for people with HIV: the Dental Reimbursement Program (DRP) and the Community-Based Dental Partnership Program (CBDPP).

30. Dental Reimbursement Program (DRP) • The DRP, first funded in 1994, assists institutions with accredited dental or dental hygiene education programs by defraying their unreimbursed costs associated with providing oral health care to people with HIV. • Institutions that participate in the DRP report that unreimbursed costs of care continue to rise.

31. The Community Based Dental Partnership Program • The CBDPP was first funded in FY 2002 to increase access to oral health care services for HIV-positive individuals while providing education and clinical training for dental care providers, especially those in community-based settings. • To achieve its goals, the CBDPP works through multipartner collaborations between dental and dental hygiene education programs and community-based dentists and dental clinics. • Community-based program partners and consumers help design programs and assess their impact.

32. Important program components include the following activities: • Increasing access to oral health care for people with HIV. • Providing dental and dental hygiene students and postdoctoral dental residents with training in the management of oral health care for people with HIV.

33. Key Points for FY 2011 DRP • 56 applicants eligible for funding. • Award recipients located in 21 states plus the District of Columbia. • Grantees trained over 11,700 dental students, postdoctoral dental residents, and dental hygiene students, providing oral health services to over 37,100 HIV positive patients. • 16 award recipients (29%) are predoctoral dental education programs; 39 (70%) are postdoctoral dental education programs; and 1 (2%) is a dental hygiene education program.

34. Key Points for FY 2011 DRP • 43 dental programs (77%) reported that their parent institutions were recipients of other Ryan White HIV/AIDS Program funds (not only for oral health care): [28 received Part A funds, 18 received Part B, 20 received Part C, 18 received Part D, 8 received SPNS, and 11 received AETC funds.] Additionally, 8 applicant programs received RW Community-Based Dental Partnership grant funding. • Total amount awarded: $9,641,803.00. • Applicants received 36.5% of their reported non-reimbursed costs incurred in providing care during the period July 1, 2009 through June 30, 2010 • Accessed from http://hab.hrsa.gov/abouthab/partfdental.html on 9/1/13

35. Key Points for the FY 2011 CBDPP • 12 grantees received funding. • Grantees located in 11 states. • Grantees trained nearly 3,000 dental students, postdoctoral dental residents, and dental hygiene students in HIV oral health care, providing oral health services to over 5,800 HIV positive patients. • 10 grantees (83%) are predoctoral dental education programs; and 2 (17%) are postdoctoral dental education programs. • Accessed from http://hab.hrsa.gov/abouthab/partfdental.html on 9/1/13

36. SPNS Oral Health Initiative • Of the 15 programs, 6 were located in major metropolitan cities, 5 served PLWHA in rural areas, and 4 served both urban and rural PLWHA. • 2,469 HIV positive patients who had been out of oral care for 12 or more months, except for emergency care, were enrolled in a multisite evaluation. • Over half (51.4%) of the participants had been out of oral health care for two or more years and 48.2% report needing oral health care since testing HIV+ but were unable to access it. • 2,178 participants accessed 15,337 oral health visits. • 917 patients completed their phase one treatment plan to eliminate disease and restore function.

37. Innovations in Oral Health Care for People Living With HIV/AIDS • Public Health Reports (Vol127 Supplement 2 May /June 2012) • www.publichealthreports.org

38. Selected Part A EMA’s allocation for Oral Health – FY10

39. # of Patients/Oral Health Visits Annually by RW Program Parts

40. Financing of Oral Health Care for PLWHAMedicaid Adult Benefits Medicaid is a major source of health-care coverage, including oral health care, for PLWHA. Comprehensive adult dental coverage under Medicaid is only available in approximately 20%of states. More than half of the states offer emergency or highly restricted dental services only. Medicaid programs that offer some oral health benefits may not provide adequate coverage to eliminate oral disease.

41. Dental Coverage for PLWHA – Adult Medicaid Benefits Most people with HIV who qualify for Medicaid do so by meeting the program’s income and disability standards. However, many PLWHA may not gain Medicaid coverage until their illness progresses to the point that they are determined to be eligible as a result of disability. Presently, 68% of PLWHA have incomes below 100% of the federal poverty level, yet only 34% qualify for Medicaid. Implementation of the Medicaid expansion contained in the Patient Protection and Affordable Care Act (ACA) would cover adults within 133% of the Federal Poverty Limit and would greatly benefit PLWHA. The Obama administration has signaled that states can offer their existing Medicaid package as a benchmark for newly covered adults and states do have the option to include adult dental care in their Medicaid benchmark benefits under the ACA.

42. www/familiesusa.org

43. Interactive Maps – AIDSvu.org • National, State, and Local Maps • Persons living with an HIV diagnosis by state, county, ZIP code and census tract • Social determinants of health (e.g., poverty, lack of health insurance, educational attainment) • HIV transmission modes • HIV testing and treatment centerlocations • NIH-funded HIV Prevention, Vaccine & Treatment Trials Sites

44. Ryan White Core Services vs. EHB Ryan White Core Services • Ambulatory and outpatient care • AIDS pharmaceutical assistance • Oral health care • Mental health services • Substance abuse outpatient care • Home health care • Medical nutrition therapy • Hospice services • Home and community-based health services • Medical case management, including treatment adherence services ACA “Essential Health Benefits”* • Ambulatory patient services • Emergency services • Hospitalization • Maternity and newborn care • Mental health and substance use disorder services, including behavioral health treatment • Prescription drugs • Rehabilitative and habilitative services and devices • Laboratory services • Preventive and wellness services and chronic disease management • Pediatric services, including oral and vision care

45. RWHAP Core Medical and Support Services & Essential Health Benefits Some RWHAP core medical (e.g, prescription drugs, mental health and substance abuse services) and support services (e.g, rehabilitation services) will be covered benefits under private health plans and Medicaid Alternative Benefit Plans. However, scope of coverage will vary by plan. Some RWHAP core medical (e.g. adult oral health care) and many support services (e.g., treatment adherence counseling, outreach, transportation) may not be covered benefits under private health plans or Medicaid Alternative Benefit Plans RWHAP funds may be used to pay for items or services not covered, or partially covered, by Medicaid or the client’s private health insurance plan.

46. HIV Dental Alliance (HIVdent) Coalition Building • Founded in 1997 as a coalition of dental healthcare workers, physicians, nurses, advance practice providers, consumers of care, educators, administrators and advocates • In 1997, HIVdent joins the CAEAR Coalition (Communities Advocating Emergency AIDS Relief) – 2003 • Two of HIVdent’s Faculty have been members of the Presidential Advisory Council on HIV/AIDS • The President of HIVdent is now the Vice Chair of the AIDS Institute, a DC-based national AIDS advocacy and capacity building organization • Lessons learned • Broad based coalitions often have similar goals • We cannot foster change by ourselves • Our voice can highlight unmet need for oral health care services in a broad coalition that may be aware of access issues, however they need our assistance in speaking to the problem. • Our experience with the importance of all RW Parts will lend a voice to our medical and non-medical colleagues.

47. The Future of Ryan White • Full implementation of the ACA does not eliminate the need for the Ryan White Program • Gaps in coverage will remain – both Medicaid and private insurance • Gaps in services: oral health care, medications, support services to link clients to care • Some groups will remain uninsured • Training of providers (AETC)

48. Ryan White HIV/AIDS Program – Reauthorization Timeline • When enacted in 1990, the CARE Act was adopted for a 5-year period. • The CARE Act It was reauthorized in 1996 and again in 2000. • In 2006, it was renamed the Ryan White HIV/AIDS Treatment Modernization Act of 2006. • This version of the bill contained a sunset provision. If the Act was not reauthorized in 2009, it would have gone away • In 2009, it became the Ryan White HIV/AIDS Treatment Extension Act of 2009 • The sunset provision was removed. • Next reauthorization was scheduled for 2013…

49. Where are we today? • The AIDS Advocacy community, with significant input from Congress, has decided not to move forward with reauthorization in 2013 and plans to seek continued funding through the appropriations process. • Concerns over how the Affordable Care Act and Ryan White will intersect • Payer of last resort • Core service provisions • Use of Ryan White funds to cover costs of deductibles, premiums and co-pays • Concerns over the hyper-partisan nature of Congress • HIVdent’s focus (appropriations and reauthorization) however in far too many jurisdictions, Ryan White is the only payer for oral health care for a very vulnerable population.

50. Oral Health Policy Concerns • The Ryan White HIV/AIDS Program must be funded at adequate levels • 35.6% reimbursement on the dollar is not sufficient to cover the costs of care • The CBDPP has remained at 12 sites since the onset of this valuable program • For states not expanding Medicaid, the Ryan White HIV/AIDS Program is necessary to provide basic core services including oral health care. • For states expanding Medicaid, the Ryan White HIV/AIDS Program is necessary for coverage completion including oral health care. • Ryan White HIV/AIDS Program reauthorization • HIVdent will remain partnered with our national and local HIV/AIDS advocacy partners to ensure a timely and fair reauthorization that will allow for the continued provision of comprehensive oral health care for PLWHA. • HIVdent will work with our partners to ensure a seamless transition to the ACA.