Of Magic Bullets and Social Justice: Emerging Challenges of Recent Advances in AIDS Treatment
Linsk, Nathan L., Keigher, Sharon M., Health and Social Work
HIV disease has now infected more than 1 million Americans and probably has affected an equal number of friends and family members who provide care or whose lives are otherwise markedly affected by the epidemic. This is a staggering impact for a social health problem identified only 15 years ago. AIDS and HIV have challenged and evoked ambivalent responses in all people and all professions. In response to the introduction of AZT as the first antiviral drug, Wright and Bodnar (1992) pointed out the need for a more focused social work contribution to the AIDS epidemic; this need has not changed substantially in the intervening years. Policies and programs for HIV testing and counseling, mental health services, service coordination and case management, and HIV prevention education have too often been designed and implemented by professionals in public health, nursing, medicine, and public administration and by the new hybrid, the AIDS service organization administrator. Although individual social workers have made unique contributions, social work as a profession has been slow to jump in and assume recognized leadership in the AIDS epidemic.
A new light is now illuminating the field of HIV care and services. The first phase of the AIDS epidemic was characterized by the unknown, by a lack of information. The second phase, beginning with the introduction of antiviral therapy, was associated with false hopes; the first antiviral interventions did not produce the magic cure that was initially expected. Now new drugs, the protease inhibitors, and diagnostic technologies to measure viral load are making possible the previously incomprehensible idea of managing HIV disease by keeping the virus at "undetectable" levels. Patients feel better and report reduced symptoms, increased energy, improved sleep patterns, better appetite, improved mental function, and improved quality of life in general.
HIV has not been cured, but the hope is offered that it is becoming a manageable (albeit complex) chronic disease. For how long no one knows. Studies reported at the Vancouver International Conference on AIDS last July showed that over 80 percent of clinical trial participants who received three drug combinations had their HIV burden reduced to undetectable levels (Chaisson, 1996).
HIV treatments include two components - first, prophylactic drugs to prevent and treat opportunistic infections and, second, antiviral drugs to directly reduce replication of the virus. Most of the increases in life span in recent years have been due to advances in prophylactic drugs. The most vivid examples are a variety of treatments that prevent Pneumocystis carinii pneumonia ranging from a simple dose of a sulfa drug to complex management using aerosolized pentamidine.
The major treatment innovation of the past five years has been combination therapies. These require complex monitoring and adjustment to avoid drug resistance and cross resistances. Typically, one antiviral drug is useful for a while, but over time, as the virus mutates, the body begins to resist the drug's effects or becomes intolerant of the drug. Thus, a kind of cat-and-mouse game ensues; beginning at the initiation of therapy, the physician prescribes multiple drugs and works with the patient to switch medications often enough to avoid periods when they lose their effect.
Taking these medications is complicated, involving many drugs that have different requirements in terms of timing and temperature and whether one's stomach must be empty or full. The person with AIDS lives by the timer and eats only in the "window periods" when the multiple drugs allow ingestion. All of the drugs have side effects and may need frequent readjustment. They clearly are not effective for all people living with HIV. Nonadherence (a more acceptable term than noncompliance) to a drug regimen can result in resistances to those and related drugs caused by mutations in the virus. These drug resistant viruses threaten the general public health as well as the identified patient, a situation now presented by multidrug-resistant tuberculosis. Adherence to drug regimens is critically important.
Unfortunately, the medical establishment is too often at a loss to know the optimal plan for each person with HIV. Provider and patient must make treatment decisions in concert, which may be cumbersome, especially when neither has a good history of working with the other. In spite of recent increases in government funding for HIV drugs, resources are still extremely limited; how to pay for treatment is a crucial policy question. The cost of drugs expands an already expensive care package, so that in this environment clinical decisions incorporate consideration of who shall get the drugs and who shall not.
This myriad of psychosocial implications demands the type of social work input Ell (1996) described in her recent call for social work-driven health care-related psychosocial research. In addition to addressing issues of adherence, social workers will be invaluable in addressing patient and family education, complex case management, and the need for social supports.
FINDING THE SOCIAL WORK VOICE
Given U.S. medicine's technological legitimacy, the usual pattern of progress in HIV disease treatment begins with scientific breakthroughs hailed for their promise to revolutionize the treatment of a given disease. This has been the case with many terrifying contagious public health threats: The discovery of sulfanimides closed the tuberculosis sanatoria, antibiotics controlled influenza, penicillin defeated syphilis, and the Salk and Sabin vaccines virtually eliminated polio. Social work had a role in all those campaigns in identifying people at risk, ensuring that access to treatment was open to them, and providing concomitant psychosocial support for individuals and families.
Social work has worked in concert with public health, medicine, and psychiatry to address social problems where they start in environmental conditions. Psychotropic medicines are credited with reducing the population of mental hospitals, and more recently antidepressant drugs are credited with controlling the behaviors of everyone from schoolchildren to elders with dementia in nursing homes. Medicine did not accomplish this alone. Physicians contributed in part to institutional treatment programs, which include community-based care structures built largely on social care intervention models. In spite of its name, social work has been far less prominent in recent years in providing leadership to address problems associated with social health behaviors such as family planning and sexually transmitted diseases. Too often we have relegated these, along with substance misuse, to the experts in public health or some group of generic counselors.
Social costs have a long tradition of being underwritten with public money; an example is kidney dialysis and Medicare eligibility for people with end-stage renal disease. Although adequate public funding has been increasingly absent, especially at the federal level, as each new high cost procedure is discovered, breakthroughs continue to be available to those who can get into research studies or pay for treatments themselves.
It was inevitable, when the AIDS crisis began, that hope would eventually be ignited not only by expected effective treatments, but also by the possibility of vaccines to inoculate those at risk. Recent developments show progress, if not results, on both fronts. The first humans have begun vaccine trials in recent months (MacGregor et al., 1996), and new drugs, the protease inhibitors, have begun to reduce the virus to previously unknown low levels.
As usual, private community-based movements have arisen to care for their own, particularly in resource-rich communities, while communities with complex social challenges on all fronts, including poor and oppressed populations, have found these challenges less compelling in view of all they confront. Social workers have varied in terms of how much they have been in the forefront of these campaigns.
In the United States we believe in magic bullets. Given the lack of a nationalized health program, social workers here have learned to live with the imbalances that characterize our distribution of health care-related prevention, treatment, and care. Social work could and should exert leadership in regard to many dimensions of the AIDS epidemic. Social work could contribute much to facilitating individual decisions and improving quality of life as well as to determining how to achieve social control objectives to advance HIV care and protect communities. A social work agenda is needed to address the emerging dilemmas in HIV, which include questions of access, allocation of funding, and client advocacy.
Access: Who Shall Live?
Who should receive new drugs, given their efficacy, risks, and costs? This is no longer a medical decision; the rationale and consequences are almost exclusively social and psychological. Ethically derived distribution criteria are relevant: Who can use the drugs best? Who is worthy of access to these drugs? Who can afford the drugs?
Clearly, in this capitalist society, those with means to purchase the drugs will have access to them. However, all but the richest or best insured may potentially "spend down" to the level of public funding. Then issues of who is deserving of publicly funded drugs and who should decide who is deserving must be confronted. Many of these decisions are currently being contested in the political and public health domains.
Social workers have the best skills to conduct community psychosocial assessments, determine who can follow medication plans, assess the effects of other social and environmental factors, and estimate the consequences of marginalizing specific groups. For example, HIV in substance abusers raises contentious issues. Can they adhere to a plan of treatment? Who can predict this? Can exclusion criteria be justified? Current discussions suggest excluding active substance users. What about those in recovery? It seems obvious to join with the social science community and substance abuse treatment's emerging professions to determine ethically derived criteria for the use of new drugs by substance users. Social work, with its long-standing hybrid of intervention and assessment processes incorporating both environment and person, should steer the helm of this mission. Will social work rise to the challenge?
Are poor people worthy of the new drugs? Some already assume that competing priorities in low-resource communities make adherence to drug regimens almost impossible. Such conclusions can be interpreted as thinly veiled racism, direct or environmental. The issue is not whether poor people can adhere, but rather what supports are necessary to help those burdened with complex social problems. Such supports clearly include housing for the homeless, food for the hungry, and psychosocial supports for those in need. A social work ecological framework moves the blame from the poor people who cannot adhere to the societal conditions that make adherence impossible. Social work needs to loudly reject victim blaming and to call for the effective and equitable distribution of new therapies, with an added dose of social care to ensure that the medications are part of a larger system of empowerment.
AIDS has favored those who are rejected and marginalized, a circle of allegedly undesirable groups that began with gay men, substance users, and sex workers. Increasingly the circle has expanded to encompass incarcerated people, individuals with mental illness, and virtually all communities of color. By law all people with AIDS are people with disabilities. Their hard-won civil rights protections should protect them against direct or de facto discrimination in access to care and services. Will these protections hold in the face of pressure to save public funds? A principle of civil rights is that oppressed and disadvantaged people cannot be left to advocate for themselves alone. Social workers have the opportunity to demand that all have equal access to life-saving formulas. Will social work rise to this challenge?
Who should have priority for care and services? Our medical colleagues will ensure that those whose medical situation enables them to respond best will have priority access. But who is most likely to adhere to a plan of care? Those likely to live longest? Those who can pay at least a copayment? These rationales conflict with several sound social work principles, including autonomy, self-determination, and equity. Years of life left excludes middle-aged and older people, clearly challenging social work's life course perspective and gerontological traditions.
Ethical analysis, culturally competent psychosocial assessment of who can adhere to a plan of care, and life course analysis are alternative criteria and frameworks for resolving this question. As for who will decide, social workers' understanding of human behavior and their skill in conducting both comprehensive psychosocial assessments and interventions strongly assign social workers a legitimate role.
Funding for New Drugs: The Cost of Mercy
Suddenly almost every person living with HIV known to the service system is already taking the new protease inhibitors or is clamoring to do so. A substantial number began taking the drugs when they were experimental as study participants or under compassionate use programs provided by the drug companies. These survivors need to continue to follow their treatment regimens to avoid drug intolerances and resistances. And large numbers of people are eager to begin therapies whose medical providers are ready and willing to initiate them.
Who will pay the price? Bartlett (1996), an eminent HIV physician and managed care expert, estimated that the wholesale cost of these drugs per year using standard dosages ranges from $2,100 (for one drug, DDI) to $5,720 per year for nucleoside antiviral drugs in various combinations such as AZT or DDI, which predate the new protease inhibitors.
For combinations including protease inhibitors (Saquinavir, Ritonavir, and Indivavir, as well as Nevarapine, which is a nonnucleoside reverse transcriptase inhibitor), the cost ranges from $8,220 to $11,815 per year for these drugs alone, not including other pharmaceuticals, treatments, and outpatient and inpatient care. Wholesale costs of the drugs are relevant because almost no one pays for them personally. Most drugs are paid for through state and federally funded drug reimbursement programs; a smaller number are covered through insurance and managed care programs, and some patients pay for their own drugs for a short period or as part of deductibles.
Federal Responses. The largest share of the burden of drug reimbursements is borne by state Medicaid formularies and the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 AIDS Drug Assistance Programs (ADAP). The ADAP program initially provided drug reimbursement limited to AZT, prophylactics, and antifungal and antibacterial drugs. Many states supplement federal funds to meet the growing costs of these drugs, which were targeted widely with rather generous means tests (for example, individual incomes of $30,000 per year or less). The programs were constructed as a large safety net to catch those who could otherwise care for themselves. These programs functioned in concert with state Medicaid programs.
The federal budget for the ADAP programs was $52 million in fiscal year (FY) 1996. For FY 1997, the administration requested $65 million. A last-minute budget increase meant that $115 million was allocated for drug reimbursement from the federal program. Still, the funds are inadequate. In Illinois, for example, it is expected that available funds will be sufficient for only four months and will run out by the end of January 1997. In that state a grassroots campaign is under way to increase overall state funding by $10 million.
These costs are not alarming if considered in the context of the care system; they potentially prevent or defer further care episodes and hospitalizations. With previous estimates of the cost of caring for a person with HIV over the lifetime at $160,000 to $200,000, these additional costs of $12,000 to $15,000 per year may appear to be a bargain. Unfortunately, transfers of public monies from one pot to create a large savings in another, future pot are not always easy to demonstrate as sound policy.
State Approaches. Some states have allocated funds from general revenues or other sources to contribute to the costs of these new drugs. Although the federal programs do not formally require matching funds, advocacy efforts and prudence have often led to supplemental allocations. The AIDS consumer and advocacy community often feels that funding the drugs is a state responsibility, and they are reluctant to divert funds from other needed services to drug reimbursement for the short run. Nonetheless, funds are now increasingly being "borrowed" from other Ryan White CARE Act titles, prevention money, and other service categories including case management and mental health and psychosocial programs. This may be penny wise but pound foolish, because the other programs do much to enhance quality of life and address many of the problems of living that remain after the drugs are taken. The choice between prevention and services has never been more difficult than in choosing whether to spend dollars to prevent HIV transmission or to treat infected people with emerging therapies.
Because funds are so tight, states have been creative in adjusting their drug formularies. Some have simply excluded or never approved the newer and more expensive drugs, making them available only to those who are rich or who have richer insurance resources. Others have added newer drugs but have eliminated almost all other drugs from the formularies. This does not always make good sense from the perspective of the intended recipients. For example, in Illinois only one drug, Saquinavir (Invarase), has been included in the formulary. It was the first drug available, but it is not the best clinical option due to side effects and limited effectiveness. The system is now blocked, because policymakers are afraid to add other drugs to a menu that has already been stripped of most other needed drugs and still cannot keep up with the demand for treatment. The result is isolated decisions that lead to everything from stagnation and inaction to chaos, where no one knows what to do and systems become duplicative, fragmented, or poorly targeted.
Consumer Voices and Client Advocates
One type of access that is easy to achieve in many of these programs is access to policy decisions. The Ryan White CARE Act programs, unlike many other federally funded programs, make decisions largely on the basis of recommendations from consortia and planning councils. These are mandated to include a large number of consumers and representatives from affected groups. The remaining members are consumer advocates and service providers, often AIDS program administrators or direct helpers. Social workers have often taken their place in these roles with or without resulting in a visible and unique social work response. The opportunity to affect policy is greatest at the local level, whereas at the state and federal level providers, consumers, and consortia have been influential in informing and persuading policymakers about the need to expand these programs.
At a minimum social workers need to understand both the clinical and policy dilemmas that have emerged in response to these new drug therapies, which may augment life for people with HIV. It is our business to remind government and the public about how many people need to be helped and how that help is distributed, as well as to assist in ensuring that those who have access to the drugs benefit from drug adherence and have access to other needed services.
SOME CAVEATS ABOUT THE FUTURE
Social work has vital roles in influencing policies, programs, and practices to address this third phase of the HIV epidemic. Some of the directions on a road map for the future include
* Learn from the past. These drugs may not be the answer; others are coming.
* Establish our domain as social workers, case managers, health educators, and counselors before other professions claim these roles as their own.
* Claim our place in making decisions about programs, clinical guidelines, policies, and programs. HIV services planning bodies are open to the participation of social workers as members and observers.
* Watch the legislative and budgetary process and provide input. Testify, educate, and encourage a consumer-driven response to current changes in HIV treatment and care.
Bartlett, J. G. (1996). Cost of antiviral therapy. Hopkins HIV Report, 8(3), 11.
Chaisson, R. E. (1996). Can HIV infection be cured? Hopkins HIV Report, 8(3), 1, 5.
Ell, K. (1996). Social work and health care practice and policy: A psychosocial research agenda. Social Work, 41, 583-592.
MacGregor, R. R., Gluckman, S., Lacy, K., Kanietsky, B., Boyer, J., Wang, B., Bagarazzi, D., & Weiner, D. (1996, July). First human trail of a facilitated DNA plasmid vaccine for HIV. Paper presented at the 11th International Conference on AIDS, Vancouver, BC.
Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990, P.L. 101-381, 104 Stat. 576.
Wright, E. J., & Bodnar, J. (1992). AZT: Hope for many, help for few. Health & Social Work, 17, 253-260.
ABOUT THE AUTHORS
Nathan L. Linsk, PhD, ACSW, is director, Midwest AIDS Training and Education Center, and associate professor, Jane Addams College of Social Work, University of Illinois at Chicago, 1040 West Harrison Street, Chicago, IL 60607. Sharon M. Keigher, PhD, is director, Social Work Program, School of Social Welfare, University of Wisconsin-Milwaukee.…
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Publication information: Article title: Of Magic Bullets and Social Justice: Emerging Challenges of Recent Advances in AIDS Treatment. Contributors: Linsk, Nathan L. - Author, Keigher, Sharon M. - Author. Journal title: Health and Social Work. Volume: 22. Issue: 1 Publication date: February 1997. Page number: 70+. © 1999 National Association of Social Workers. COPYRIGHT 1997 Gale Group.
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