Doctors, drugs and health insurance

The magnitude of the challenges facing HIV care in the USA was outlined in an analysis of the spectrum of engagement in care in the USA in 2006, as shown in figure 3.9 Of the estimated 1.1 million people living with HIV at that time, only 19% were in care with an undetectable viral load, only one half were linked to primary care and only 40% were retained in care, that is, not lost to follow-up over 1–2 years. Because the likelihood of achieving an undetectable viral load for patients in care in the USA is approaching ≥90%, the major deficiencies in HIV care in 2011 are the failure to identify HIV-infected individuals by rapidly expand HIV testing to all adults in the USA and the serious inability to reliably enrol and retain patients in HIV primary care once they have been diagnosed.

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Figure 3

The spectrum of engagement in HIV care in the USA, 2006.

It has been argued that HIV care in the USA in the current era is greatly simplified, with little need for the community support services that are unique to HIV and that are embedded in the Ryan White CARE Act, an argument that ignores recent trends and that will be firmly rejected below. Even if one considers only clinicians, drugs and health insurance, HIV care in the USA is in some jeopardy.10

Physician shortages are a growing problem in the USA, with an estimated 62 900 physician shortage by 2015, including 29 800 primary care physicians.11 The HIV clinical care workforce in the USA in 2011 also appears to be insufficient to meet our future needs. In a 2009 survey of HIV clinicians, one third indicated a likelihood of retirement in the coming 10 years and 90% indicated a concern over a shortage of adequate HIV clinicians, that is, doctors, nurse practitioners and physician's assistants7 In another survey, 70% of public HIV clinics reported difficulty in recruiting HIV clinicians and a lack of qualified HIV clinicians was identified as a major barrier to expanded capacity.7 Clinician reimbursements for HIV care account for <2% of all healthcare costs for people with HIV and have not kept pace with the increasing complexity of the management of the ageing HIV population. Two national HIV physician organisations recently issued joint recommendations to address physician and care giver shortages, particularly in public clinics.7 Similarly, the US National AIDS Strategy (NAS) includes an objective to increase physician training and reimbursement by expanding the AIDS Education and Training Centers.8 Additional funding for the National Institutes of Health is also needed to train more young HIV physicians in HIV care and research at public and university-based hospitals.11

Access to ART and other essential HIV medications in the USA is increasingly problematic. Users of the national AIDS Drug Assistance Program (ADAP) increased by 33% from 2007 to 2010, and yet the federal contribution in that period rose only by 3% and state funding for the ADAP only rose by 18%.12 The ADAP waiting lists now number 9066 persons in 11 states (September 2011) and climbing, and many states have reduced the ADAP formularies.13 Even states with the past exemplary ADAP records are facing severe budget shortfalls, and future reductions in the ADAP funding are likely. In all states, low-income Americans are hardest hit by limits in the ADAP, and people living with HIV in the USA are increasingly poor, economically vulnerable and uninsured.12 One third of people with HIV in the USA use the ADAP, and of these, three in four have incomes below 200% of the national poverty level.13 Sixty-one per cent of the ADAP recipients are uninsured and more than half are African–American and Hispanic. Restrictions and rising co-payments for ART via private insurance are impeding ART access for privately insured patients as well.

As for health insurance, the fate of Medicaid, Medicare and national health reform are uncertain in 2011.14 At present, 30% of people with HIV have no health insurance, only 17% have private insurance and the main sources of funding for HIV care in the USA are public, that is, Medicare, Medicaid and the Ryan White CARE Act (Ryan White). Ryan White was passed in 1990 to support HIV care, medications and supportive services that were not available through other public and private health insurance for uninsured and low-income people with HIV (table 1).15 Medicaid provides health benefits to low-income individuals, and in fiscal year 2007, there were 213 000 HIV-infected Medicaid enrolees, almost one half of all people with HIV infection in care. In 2014 when US health reforms, that is, the Affordable Care Act (ACA), take effect, people living with HIV cannot be excluded from obtaining health insurance due to their previous condition, that is, their HIV infection, and those with incomes below 133% of the federal poverty level will be eligible for Medicaid without meeting the current requirement of serious physical disability. This will be the most dramatic single improvement in the care of people with HIV infection that results from the ACA reforms.16 Already under the new reforms, a person with HIV as a pre-existing condition has the ability to join a ‘Pre-Existing Condition Insurance Plan’; as of March 2011, 18 211 people in the USA had signed onto such plans.17 Health reform faces considerable political opposition and legal challenges in several states. However, initial fear and confusion may change with experience; a recent poll in Massachusetts, which is one of the few states with mandatory health insurance since 2006, found that 63% of residents approved the plan, up to 10% from 2009, and only 21% disapproved.18

The future of Ryan White is equally uncertain. Some have said that while the ADAP should continue, other aspects of the HIV care safety net provided by Ryan White should be ‘folded into’ health reform, as determined by the states.19 HIV advocates are wary of the details of this transition, and for good reason, as can be seen by the wide disparities in Medicaid and ADAP funding between states.8 While 40% of people with HIV receive support from Medicaid for care and medications, eligibility is restricted to people who are disabled, in spite of the obvious benefits in treating a person with HIV with ART before they become disabled. This backwards and shameful policy error will be corrected by the ACA in 2014. However, the details of state-by-state implementation, as well as future renewal of the Ryan White CARE Act, are still uncertain.14 16

Comprehensive multidisciplinary HIV care is needed now more than ever

HIV care cannot be simplified to just doctors, drugs and insurance, though each of these is essential. Comprehensive multidisciplinary teams for the care of people living with HIV arose out of necessity due to the broad range of clinical and psychosocial needs of patients, the diversity of affected individuals and families and the great value of community support in the early days of the epidemic.20 Ryan White explicitly supported such teams in the early 1990s and thereby created the template for the modern ‘medical home’.21

The current role of multidisciplinary teams with strong community collaboration in HIV care is the object of empiric outcomes research, and the evidence to date supports their use and expansion. In one study at a public hospital in Chicago, multidisciplinary teams were shown to improve enrolment and retention in care by 20% when identified patient needs for transportation, drug and mental health counselling and case management were met.22 More implementation research into the retention of prisoners in care following incarceration are needed, as are better strategies to engage hard to reach at-risk populations, such as transgendered individuals and bisexuals.23 In other studies, outcomes of housing, case management and drug treatment interventions demonstrated significant improvements in the health status of people with HIV, in some cases associated with significant reductions in the costs of their healthcare.23–29 Of the 212 000 Medicaid enrolees with HIV infection in 2007, 50% had a dual diagnosis with substance abuse or mental illness, and yet many states do not cover services for these conditions under Medicaid, while Ryan White programmes often do.16 If transitioning such patients from Ryan White-supported programmes to Medicaid limits access to mental health or drug treatment services, HIV outcomes would be likely to decline.

Recent trends in HIV epidemiology, pathogenesis, prevention and treatment reinforce the need for multidisciplinary teams in 2011. For example, the integration of care and prevention and the expansion of opt-out HIV testing require a diverse team with enhanced community sensitivity.30 31 The complexities of treatment as prevention, including pre-exposure prophylaxis and microbicides (in future) will place additional demands on HIV teams for supportive community engagement and education.32 Combination prevention methods and ‘high impact’ prevention strategies that rely on the targeted use of evidence-based interventions to ensure the highest possible yield from precious prevention resources require integration of care and prevention and innovative team approaches.33

As the mean age of people with HIV is increasing and more people with HIV have age-related conditions, such as heart disease, hypertension, kidney disease, non-HIV-associated cancer and chronic neurologic disease, HIV care must include coverage for the diagnostic tests and medications necessary to manage these conditions, as well as multidisciplinary teams with expanded expertise that includes HIV-associated geriatrics.34–37 In addition, the costs of the treatment of co-morbidities such as hepatitis C will further challenge state budgets, as with the recent Food and Drug Administration approval of two new protease inhibitors telaprevir and boceprevir.38 39

Women with HIV face additional obstacles to care in the USA in the modern era. Women are less likely to receive ART and more likely postpone care due to lack of transportation or illness than men, and two thirds of women with HIV suffer mental or physical abuse following diagnosis.40 Some states currently are restricting or cutting state Medicaid funds for family planning services for low-income women out of a narrow concern for public funding of abortions; these actions may restrict low-income women's access to healthcare, including HIV counselling and testing and ongoing HIV primary care.41 More broadly, the economic recession has led to cuts in state budget lines for a variety of social programmes that target low-income women and families, such as housing assistance, unemployment assistance, vocational training, infant welfare programmes and food stamps. There is good evidence that childcare, disclosure counselling to prevent domestic violence and transportation are as important as doctors, drugs and insurance for women with HIV to enter and remain in care.42

The urgent need for support for prevention and expanded HIV testing in the USA

The future of HIV care in the USA must include smarter and more aggressive efforts to prevent new infections. The investment in HIV prevention in the USA to date has been dreadfully inadequate, even before the global recession; the number of annual infections—56 000—has not changed in 12 years.5 CDC funding for HIV prevention since 2002 declined by 20% after adjustment for inflation, and prevention accounts for only 4% of all federal expenditures for HIV/AIDS.31 Funding levels for HIV prevention from state and local governments have been flat since 2004. In spite of concerted efforts, only 53% of adults aged 18–64 years have ever been HIV tested and only 19% were tested in the last year.43 An estimated 21% of Americans with HIV do not know that they are infected, which is a decrease of only 2% from 2003. HIV testing is still coming too late; in one recent study, one third of people who tested positive developed an AIDS diagnosis within 1 year of testing.44 A rational approach to future spending on HIV must include a substantial investment in HIV prevention and expanded HIV testing.

Since its introduction in 2006, the implementation of the ‘Opt Out Testing’ strategy advocated by CDC has faltered.31 In many states, restrictive law and regulation requiring written informed consent to testing remain in place, and their impact to discourage, rather than encourage, testing has been lasting. In most centres, a viable mechanism for the effective referral of patients who test positively into care has not been a simple matter, particularly in an era in which patient registrations in HIV clinics are at record highs. As shown in figure 3, only about 75% of people who test positively are linked to HIV care after 6–12 months and only about one half of people who know they are HIV infected are engaged in regular HIV care. Here, in Chicago, the University of Chicago Infectious Diseases Section has recently partnered with CDC and the Chicago Health Department as part of a national effort to expand testing and engage and retain more people with HIV in care. Similar investments in operational research are needed to explore best practices in the broad and rapid implementation of opt out testing that includes a streamlined mechanism for entry and retention into care, including adequate health insurance.

The way forward

The fragmented public health and healthcare systems in the USA, and the equally fragmented sources of support for HIV prevention and care have defied simple large-scale remedies since the start of the epidemic. Indeed, Ryan White was designed in 1990 to fill the gaps, or in some cases the gaping holes, in services and HIV medications, particularly for low-income Americans. Medicare, Medicaid and private insurance plans all have inadequacies in covering effective HIV care. Since HIV prevention funding is largely through CDC and state and local health departments, most HIV prevention activities are uncoordinated and unconnected to HIV clinical care. In this volatile era of health reform in the USA, the future of HIV care will be largely determined and constrained in Washington and in state capitals. At the same time, innovation and implementation science in HIV care must continue at the local level, and there are some reasons for optimism on this subject.

The NAS that was developed in July 2010 by the Obama Administration (ie, the executive branch of government in the USA) offers a cohesive plan for HIV prevention, care and support, as well as specific targets by which to gauge our progress.8 Though the NAS has been criticised for offering a limited vision and an unimaginative implementation plan, it nonetheless represents an important unified national vision of the future of HIV.45 Table 2 shows the NAS strategic areas and targets.

The way forward, then, for HIV advocates, care givers and stakeholders is to hold the federal government accountable to the NAS and its milestones, to advocate for more rapid progress and to press for more ambitious targets. Advocacy for comparable state plans for effective prevention and care is needed. Central to meeting or expanding these targets is increased funding for HIV prevention and care activities. Effective strategies with incentives to implement opt-out HIV testing are urgently needed, as are pilot studies to implement ‘Test and Treat’ strategies and to integrate care and prevention using treatment as prevention in order to reduce the annual rate of infections.

HIV advocates and healthcare providers are facing their greatest challenge to work collectively on health reform in Washington and in state capitals. The shifting health reform policy debates must not be allowed to obscure the fundamental purposes of Medicaid and Medicare, and their contributions to the support of care for people living with HIV must be defended. Similarly, HIV advocates in Washington and in state capitals will have to successfully argue for the renewal of the Ryan White CARE Act, including its support for multidisciplinary care with community linkages and ADAP, and then ensure its full implementation at the federal and state level.

In order to advance this case, empiric evidence on the health benefits and cost-efficacy of HIV prevention, early HIV testing and entry into care and effective HIV/AIDS care will have to be expanded in a convincing fashion. For this reason, cost-effectiveness analyses should accompany the robust emerging science of operations and implementation research into best practices in HIV prevention, care and support. There are exceptional local and larger scale models for ongoing quality improvement in HIV care in the USA, such as Kaiser Permanente, the Veterans Administration, Ryan White Part C Clinics and the New York AIDS Institute HIVQUAL programmes, all of which are sites for testing HIV care innovations. The new national health reforms offer optimism for outcomes research with the new Center for Medicare and Medicaid Innovation that will support the testing of small- and large-scale care innovations.

These political and health system considerations often seem far removed from HIV clinics and their patients and providers in the USA, and yet they must be based on the same foundation of ‘AIDS exceptionalism’ that has characterised the remarkable history of HIV care in the USA. As in the past 30 years, the patchwork health system for people living with HIV will have to compensate for a fragmented health system. Vigilance and flexible political action will be required to ensure the preservation of the best practices in HIV care that have been learnt to date, as well as continuing innovation and implementation research for our future directions. It is the responsibility of HIV care givers and advocates to ensure that ‘AIDS exceptionalism’ is retained, refined and better informed in the future and that human rights continue to guide HIV care and health policy. The growing scientific evidence for the effectiveness of multidisciplinary teams with psychosocial support services for integrated HIV care and prevention points the way forward for meeting the needs of the future of HIV care. An expanded implementation science is needed to determine best practices in such key areas as opt-out HIV testing and in patient recruitment and retention in primary care.

In the long run, Americans can only look north to Canada or across the Atlantic to Europe, where single payer systems work efficiently with far lower administrative costs and far greater consumer satisfaction and then marvel at the American healthcare system. Our NAS and insurance-based health reforms are important steps towards a unified care system for HIV, but they are only first steps. We are likely to see many twists and turns until the country recognises that only a single payer system will meet all the country's needs for efficiency, cost savings and accessible healthcare for all Americans, including the growing numbers of people living with HIV.