Inaccessible Miracles? Women's access to HIV/AIDS medications.
The Center for Women Policy Studies designed this study to learn about women's experiences with access to HIV/AIDS medications. Eighty-five women living with HIV/AIDS in the Washington, DC metropolitan area responded to an anonymous questionnaire. Women in the study were for the most part knowledgeable about various HIV/AIDS medications, including protease inhibitors, and about ways to gain access to these drugs. However, although most of the women in the study (77 percent) reported taking HIV/AIDS medications, women were far more likely to take single retroviral medications than combination drugs or protease inhibitors. Women also were most likely to be covered by Medicaid rather than by private insurance.
As many recent media reports attest, HIV/AIDS medications in general and protease inhibitors in particular have been widely heralded as miracle drugs for people living with HIV/AIDS (Carton, 1996; Dunlap, 1996). Reports of treatment failures notwithstanding (Stolberg, 1997a), new HIV/AIDS medications have had a dramatic impact on the length and quality of life for many people living with HIV/AIDS. Indeed, the Centers for Disease Control and Prevention (CDC) (1997) credit much of the recent decline in AIDS mortality to "improvements in medical care, the use of combination therapy with antiretroviral agents, ... increasing use of prophylactic drugs to prevent secondary AIDS-OIS... and the widespread availability of protease inhibitors" (p. 172). Yet, a closer examination of the federal agency's statistics shows that these medications are not necessarily proving to be as miraculous for women as they have proven to be for men. While AIDS deaths declined among men by 15 percent in 1996, the death rate for women in creased by 3 percent during the same period (CDC, 1997).
In 1997, the Center for Women Policy Studies conducted a series of four focus groups with 29 women living with HIV/AIDS to learn about their health care needs and to include women's voices in HIV/AIDS policy discussions. Many of the women recounted barriers to various health care services, including access to medications, as a primary concern. Specifically, women reported that they often had to seek care from multiple sources, received unpleasant care from health care providers, and often interacted with health care providers who were ignorant about issues relevant to women living with HIV/AIDS (Center for Women Policy Studies, 1997a).
The focus group findings -- and the gender differences in HIV/AIDS mortality despite the promising effects of protease inhibitors -- prompted the Center to design this pilot study to examine more thoroughly women's experiences gaining access to HIV/AIDS medications, including protease inhibitors. Specifically, we wanted to learn what women knew about HIV/AIDS medications, how women's relationships with their health care providers influenced their access to and utilization of HIV/AIDS medications, how and where women received and paid for their medications, and the formal and informal networks that women used to secure their medications.
Although we were interested in learning of the financial impediments to HIV/AIDS medications, this was not the main focus of our study. Indeed, research has demonstrated that factors other than being able to pay for one's medication often influence access to drugs (Schecter et al., 1994; Weissman et al., 1994). Based on information that women provided in our focus groups, such as their problems with transportation to get medications, we hoped to learn about additional factors that prevent or limit women's ability to get their medications. Moreover, we wished to explore how factors such as race and gender may influence women's access to HIV/AIDS medications.
Women's Access to HIV/AIDS Medications in Sociocultural and Psychosocial Context
Although biomedical factors, such as physiological differences and rates of disease progression, may explain much of the HIV/AIDS gender mortality disparity, sociocultural and psychosocial factors also play a critical role. Melnick et al. (1994) speculate that the poorer survival rate among women may be the result of differential access to or use of health care services -- including HIV/AIDS medications, "lower socioeconomic status, homelessness, domestic violence, substance abuse, and lack of social support" (p. 1920).
Other sociocultural factors that may influence the HIV/AIDS mortality disparity between men and women include, but are not limited to, gender and racial discrimination in the provision of health care services and access to clinical trials, physician attitudes towards patients, and the nature of the patient-health care provider relationship. According to Stein et al. (1991), physicians may more frequently offer AZT to people who are white, non-injection drug users, and men because they request the drugs or because physicians communicate more effectively with them than they do with women, drug users, and people of color. Indeed, HIV/AIDS activists have long regarded physicians who refuse to prescribe medications to certain groups of people on the basis of race or other characteristics and African Americans' mistrust of the medical establishment as major impediments to HIV/AIDS treatment for people of color (Richardson, 1997).
Even having health insurance does not necessarily guarantee access to HIV/AIDS services and medications. For example, Weissman et al. (1994) found that regardless of insurance status, people with HIV/AIDS who had been homeless or had less education were less likely to report having access to medical services. Similarly, Schechter et al. (1994) found that even when all of the white gay men in their study had universal health insurance, those with higher incomes and education had a slower progression to HIV infection. However, Schechter et al. (1994) posited that the relationship between differential disease progression and socioeconomic status was not due to access to health care but rather to psychosocial factors such as social support and nutrition.
Protease Inhibitors: Implications of Gender, Class and Race
Since the advent of medications to retard the replication of the virus, HIV/AIDS activists have sought to ensure that people living with HIV/AIDS have access to affordable medications. For example, in 1987 the AIDS activist group ACT-UP launched a series of protests against Burroughs-Wellcome, the manufacturer of AZT, to protest the company's pricing of the expensive drug and Burroughs-Wellcome responded by reducing the cost of the drug. However, since most of the people infected with the virus in the United States during that period were white men who had sex with men, HIV/AIDS activists were primarily advocating for a population that had access to health insurance. Moreover, white, middle-class gay and bisexual men were, and remain, the major participants in clinical trials, another means of access to medications.
Historically, women of all racial/ethnic backgrounds, men of color and injection drug users have been underrepresented in clinical trials for HIV/AIDS drugs (Stone et al., 1997). Women, and men of color, are less likely to know about new HIV/AIDS drugs or to be informed that they are eligible to participate in clinical trials (Stone et al., 1997). Lynn (1997) has asserted that the underrepresentation of women and men of color in clinical trials has serious implications because one cannot assume that indicators of HIV progression such as CD4 lymphocyte counts and viral loads are similar in different racial groups and in men and women, or that drugs behave similarly in different racial groups or in men and women. Indeed, there is evidence that gender differences affect how HIV/AIDS medications work. For example, a study of the drug delavirdine, in which 19 percent of the participants were women, showed a longer retention time in women s bodies than in men s (Women Alive, 1997). In another clinical trial compari ng AZT+ ddI and AZT+ ddC to AZT alone, women who took fewer doses of ddI did as well as men who took the recommended ddI dosage (Women Alive, 1997).
As protease inhibitors began to show promise in clinical trials, AIDS activists continued to advocate for expedited and expanded access to medications prior to approval by the Food and Drug Administration (Gavaghan, 1995). Yet, most of the knowledge about protease inhibitors has been based on clinical trials conducted on men. In fact, "fewer than 75 women participated in the initial clinical trials of the FDA-approved protease inhibitors" (Center for Women Policy Studies, 1996, p.1).
Despite their great promise, protease inhibitors remain elusive for low income people, men of color, and women of all races (Basile-Ryan and Survey Research Lab of Virginia Commonwealth University [SRLVCU],1997; Stein et al., 1991; Stolberg, 1997b; Weissman et al., 1994). A study of people living with the virus in New York found that African Americans and Latinos were less likely than their white counterparts to report using combination drugs including protease inhibitors (Richardson, 1997). While 33 percent of white respondents reported using protease inhibitors, only 12 percent of African Americans and 19 percent of Latinos said that they used these medications. A 1997 Philadelphia HIV Commission-sponsored study yielded similar findings. Whereas 71 percent of whites reported using protease inhibitors, only 56 percent of African Americans and Latinos reported that they used protease inhibitors (Basile-Ryan & SRLVCU, 1997). Women (56 percent) were significantly less likely than men (66 percent) to use proteas e inhibitors. The study yielded no interactions for race and gender and protease inhibitor use.
Access to Health Care: Implications for Access to HIV/AIDS Medications
Absent from many of the reports about the miraculous properties of protease inhibitors for people living with HIV/AIDS is information about how intersections of gender, race and class discrimination influence people's access to HIV/AIDS care in general and access to needed medications in particular. Citing evidence that African Americans are less likely to get AZT and PCP prophylaxis than white patients when controlling for insurance status, injection drug use and other demographic factors, Bangsberg, Tulsky, Hecht, and Moss (1997) note that "... the health care system has not always provided equitable care to minority patients with HIV [and] there is also evidence that the system has failed to offer appropriate care to minority patients with HIV" (p. 63).
Gender also influences access to care. Compared to men, women--especially women of color -- are mote likely to be uninsured or to rely on public insurance (Center for Women Policy Studies, 1 997b). Not surprisingly, women -- particularly women of color -- fare worse in terms of their access to HIV/AIDS care and services and medications (Basile-Ryan and SRLVCU, 1997). For example, in comparison to privately insured people, people covered by public insurance programs such as Medicaid and Medicare and uninsured people were less likely to use pro tease inhibitors (Basile-Ryan and SRLVCU, 1997).
Findings from a qualitative study of 36 women living with HIV/AIDS in the metropolitan Washington, DC area indicate that, regardless of health insurance status, for most of the women the cost of medications was a significant barrier to care (Viruell-Fuentes and Wolfe, 1998). Even women who received medications through the Ryan White CARE Act-funded AIDS Drug Assistance Program (ADAP) reported that ADAP did not always cover the medications that they needed and that they could not themselves afford to pay for these medications.
ADAP was developed to provide access to HIV/AIDS medications for people who are uninsured or underinsured and lack coverage for medications. Because states determine the number and type of medications covered under their drug formularies, drug formularies and ADAP eligibility criteria vary widely from state to state (National Association of State and Territorial AIDS Directors [NASTAD] et al., 1997).
In June 1997, the U.S. Department of Health and Human Services (DHHS) recommended that patients with asymptomatic HIV infection be treated with antiretroviral therapy. However, with the costs of new combination drug therapies ranging between $10,000 and $15,000 per year, states have taken a number of steps to keep their programs functional and reduce costs, such as limiting the number of people who can enroll, restricting access to certain medications, reducing coverage for certain medications, and delaying or suspending coverage of new drugs (NASTAD et al., 1997; Pedersen and Larson, 1997). In April 1998, the Department of Health and Human Services announced a record 71 percent increase over the previous year's funding level for state ADAP programs (DHHS, 1998). Yet, the rising demand for the expensive drugs suggests that even this increase will not guarantee access to the costly medications for all who need them.
In addition to the already overburdened ADAP programs, Medicaid also restricts access to the new drugs. Since more women than men are covered by public insurance, the Medicaid limitations on coverage have serious implications for women's access to HIV/AIDS medications.
Rethinking Issues of Adherence As Issues of Access to HIV/AIDS Medications
Many HIV/AIDS-related medication studies have focused on adherence and compliance issues. For example, a recent national adherence survey found that 43 percent of the persons with HIV/AIDS reported they did not take their medications as prescribed (Gallant and Block, 1998). Respondents gave several reasons for failing to follow physician's directives, including running out of their medications, forgetting to take their medications, being too busy, leaving the house without the medications, failing to wake up for dosing time, and being too hungry to follow the food regimen (Gallant and Block, 1998).
Yet, in their qualitative study with women living with HIV/AIDS, Viruell-Fuentes and Wolfe (1998) found that issues that at first glance appear adherence-related might actually be access-relevant. Specifically, women in that study reported that their inability to afford the medications often prompted them to resort to alternative ways of getting the medications, such as obtaining "samples from doctors, short-term supplies from clinics, pharmaceutical companies' prescription assistance programs, or other women and relatives who shared their HIV medicines -- a very informal and precarious system of care for many women" (Viruell-Fuentes and Wolfe, 1998, p. 5).
In recognition of the dearth of women's voices in health and policy discussions relevant to HIV/AIDS medications, the Center designed this study to enhance understanding about women's experiences in gaining access to HIV/AIDS medications, including protease inhibitors.
This cross-sectional study was designed to learn about women's access to HIV/AIDS medications. The study relied on a nonprobability sample of women living with HIV/AIDS in the Washington, DC metropolitan area. Since HIV/AIDS is still a highly stigmatized disease, a probability sampling method of women living with HIV/AIDS was not practical. Thus, we used convenience sampling and snowball sampling methods to identify eligible respondents for the survey.
The Center developed an anonymous self-administered questionnaire and prepared it in English and Spanish. We pre-tested both versions of the questionnaire in two focus groups -- one for English speakers and one for Spanish speakers. Each focus group consisted of six women. We contacted HIV/AIDS service organizations in the Washington, DC metropolitan area to solicit their recruitment of women living with HIV/AIDS to participate in the focus groups to pretest the questionnaire. Focus group participants were informed of the purpose of the focus group, completed the draft survey, and provided feedback on the questionnaire's content. Focus group participants received a $50 stipend for their participation.
In order to recruit participants for the study, we distributed letters about the study to local HIV/AIDS organizations and health care providers that serve people living with HIV/AIDS in the District of Columbia, Maryland and Virginia. Women interested in participating in the study learned about the study in one of two ways. They either responded to flyers about the study and called the Center directly for a survey packet or they received a survey packet from the organizations that agreed to assist the Center in recruiting survey participants. Finally, we encouraged women who had completed surveys to refer other women living with HIV/AIDS to the Center to complete the survey.
Prospective respondents received an overview of the study and a statement about the informed consent, anonymity and confidentiality provisions. They also were told that they would receive a $10 incentive in the form of a check for their participation. Upon returning the completed survey, participants who had completed the English version of the survey received the $10 incentive, a copy of What A Woman Should Know About Protease Inhibitors (Center for Women Policy Studies, 1996), a copy of Knowledge, Action, Health: A Woman's Guide to HIV Treatments (Women Alive, 1997), and a sample copy of the newsletter, Women Organized to Respond to Life-threatening Diseases (WORLD, 1998). Respondents who completed the Spanish version of the survey received the $10 incentive, two copies of POZ En Espanol, a magazine targeted to people living with HIV/AIDS, What a Woman Should Know About Protease Inhibitors in Spanish (Center for Women Policy Studies, 1996), and the most recent edition of the Center's bilingual newsletter f or women living with HIV/AIDS, WomanCARE News. (The WORLD newsletter and Women Alive publication were not available in Spanish). All respondents were given information about how to obtain a summary of the research and how to subscribe to WomanCARE News, which is free for women with HIV/AIDS.
The response rate for the English version of the survey was 26 percent. The response rate for the Spanish version of the survey (4 percent) was far lower than the English version, suggesting that the recruitment strategy for Latinas may not have been sufficiently responsive to their needs. For example, few of the clinics and HIV/AIDS service organizations that we contacted served large Latina populations; in addition, SALUD, one of the area's largest Latina HIV/AIDS service provider organizations went out of business shortly before we disseminated the survey. Further, it is possible that the survey's length was a barrier and that it may not have been written in a form that was accessible or "user-friendly" for some potential Latina respondents.
The 62 item anonymous survey included questions that respondents could answer by checking appropriate boxes or writing in responses when applicable. The survey was organized into five sections. The first section included questions about the respondent's medical history, such as year of HIV/AIDS diagnosis, viral load and t-cell counts. The second section asked respondents to provide information about their use of HIV/AIDS medications and to describe whether they were now taking or had taken single or combination antiretroviral medications and protease inhibitors. The third section asked respondents to provide information about their health insurance status, their knowledge of ADAP and clinical trials, and their experiences getting and paying for their medications. The fourth section of the survey asked participants about their relationships with their primary care physicians or health care providers. The final section of the questionnaire included demographic questions.
Eighty-two women living with HIV/AIDS in the Washington, DC metropolitan area responded to an anonymous questionnaire about their access to HIV/AIDS medications. The majority of the women in the sample (76 percent) were non-Latino Black women (n = 62), 13 percent were Latina (n = 11), and 11 percent were white (n = 9). They ranged in age from 20 to 63 (M = 40.0, SD 8.0). The women in the sample were predominantly low income, with 42 percent reporting annual incomes of $5,999 or less; 20 percent had incomes between $6,000 and $11,999; 7 percent had incomes between $12,000 and $17,999; 4 percent had incomes between $18,000 and $23,999; and 1 percent had incomes of $30,000 or more. Fifty-nine percent reported that they had once been homeless; five women spent the night in homeless shelters and two women reported that they slept in the streets most nights. The women in the sample also reported low levels of education. Thirty-one percent had less than a high school education, 26 percent had completed some high sch ool, 31 percent had completed high school, and 9 percent had some college or post-high school education (3 percent did not provide this information).
Respondents were predominantly heterosexual, with only 12 percent of women reporting same-sex partners. Most of the women were single (47 percent); 20 percent were separated; 11 percent were married; 6 percent were divorced; and 3 percent were widowed. Forty-six percent of the women were responsible for the care of children under the age of 18.
Respondents' year of testing positive for HIV infection ranged from 1982 to 1997. Forty-one percent of the women had had an HIV-related illness, and 40 percent had been diagnosed with AIDS. For the most part, women were educated about HIV/AIDS-related health issues and medications. For example, 42 percent of the women in the sample knew their t-cell counts and 65 percent knew their viral load counts.
Most of the women in the study (77 percent) reported that they were currently taking HIV/AIDS medications. Despite federal guidelines recommending the use of combination therapies, women reported that their physicians were more likely to recommend the use of single antiretroviral medications (86 percent) than protease inhibitors (61 percent). Respondents also were more likely to report taking single antiretroviral drugs than combination antiretroviral medications or protease inhibitors. Although half of the women (51 percent) reported that they had taken AZT, only 25 percent were taking the drug at the time of the study. Thirty percent said that they had taken ddI and 14 percent were currently taking ddI; 14 percent had taken, and 6 percent were still taking ddC. Most of the women (28 percent) reported that they had decided with their doctors to take a single medication. In 4 percent of the cases, women reported that the decision to take a single medication was theirs alone, while 12 percent reported that th e physician had made the decision.
For the combination antiretroviral medications, 26 percent had taken AZT/ddI, but only 7 percent were currently taking the drug; 16 percent had taken, and 24 percent were currently taking AZT/3ZT; 11 percent had taken AZT/ddc, but only one woman was currently taking the drug; 10 percent had taken, and 9 percent were now taking AZT/d4t. In 47 percent of the cases, women reported that the decision to take a combination of medications was made jointly with their doctors; 7 percent reported that the decision to take the combination drugs was solely theirs, while 17 percent said that their physician had made the decision.
Compared to the numbers taking single and combination antiretrovirals, only a handful of women were now taking or had taken protease inhibitors. Twenty-two percent were currently taking Nelfinavir and 11 percent had taken the protease inhibitor in the past; 20 percent were currently taking Crixivan and 17 percent had taken it in the past; 12 percent had taken Norvir in the past and 9 percent were currently taking Norvir; and 9 percent reported that they had taken or were now taking Invirase. Forty percent of the respondents said that the decision to take protease inhibitors was a joint decision with their physicians, but 5 percent reported that they alone had decided to take these drugs and 11 percent said that their physician had made the decision.
Women also were more likely to be taking medications if their physicians had recommended antiretroviral medications (85 percent) or protease inhibitors (92 percent) (p05). Only 27 percent of women whose physicians had not recommended antiretroviral medications were taking them. However, more than half (53 percent) of women whose physicians had not recommended protease inhibitors were taking the medications.
Indeed, the fact that so many of the women who were taking protease inhibitors said that they took them even when their doctors had not recommended them suggests that women have had to act independently of their doctors to maintain their health. These results also suggest that physicians may not be promoting protease inhibitors for women to the extent that they promote single anriretroviral or combination drugs. This demonstrates the importance of improved communication between physicians and women about protease inhibitors and the circumstances under which a woman might take these drugs.
Access to Health Care and HIV/AIDS Medications
Most of the women (75 percent) reported that they currently had some form of health insurance, with Medicaid the most frequently cited. However, although 82 percent of women said that they had applied for Medicaid coverage, only 45 percent actually were covered. Other forms of insurance coverage included private health insurance (19 percent) and Medicare (15 percent). Five women received insurance through other sources, such as medical charities, and three women were covered under Veterans Administration benefits.
Women in the study relied on a variety of sources to pay for their medications. Forty-five percent said that they paid for their medications through Medicaid; 20 percent received their medications through an ADAP program; 10 percent used private health insurance to pay for their medications; 9 percent obtained free samples of HIV/AIDS medications from a health care provider or facility; 4 percent received their medications through Medicare; and 2 percent participated in clinical trials. None of the women reported getting their medications through a pharmaceutical expanded access program.
The majority of respondents (63 percent) knew of the existence of ADAP programs and had learned about them through a variety of sources, including case managers (63 percent), health care providers (27 percent), community-based organizations (20 percent); other people living with HIV/AIDS (20 percent), and the sites where they had been tested for HIV (15 percent). One woman's comment reflected the precarious nature of many women's access to needed medications: "When I didn't have ADAP, I bought my medicines with cash and it was very hard to come up with the money. I sometimes didn't buy medicines." However, counter to our expectations, only 16 percent of women reported that they found it difficult to pay for their medications, perhaps reflecting women's resourcefulness.
Further, when financial reasons were exempted, most of the women (68 percent) in the study reported that they did not face any problems in getting their medications. Problems did arise, however, from the sites where women chose to get medications. For example, 55 percent of the women reported that they had had problems getting their medications from a pharmacy. The most frequent reason for these problems were: the pharmacy ran out of medications (21 percent); respondents had to wait for the refill period to begin (17 percent); and respondents did not order the medications in advance (12 percent). Seven percent of the sample noted that a pharmacy had refused to fill their prescriptions.
When they could not get their required medications, one-third of the women (31 percent) just took their medications less frequently. Women also took their medications in lower doses (18 percent), borrowed medicine from friends or family members (18 percent), paid for medications out of pocket (18 percent), borrowed money to buy their medications (17 percent), exchanged medicines they had for ones they needed (7 percent), and got credit from pharmacies for the medicines (7 percent). As one woman reported: "My ADAP didn't cover Crixivan. I obtained it through the Clinica del Pueblo or friends so I didn't stop taking the medicines. Now my ADAP covers Crixivan." Another woman actually helped change the rules: "ADAP didn't cover my medicine. So when I needed it I went to the main office and spoke to the person in charge and they changed it so it was covered." Six percent of the women reported that they simply stopped taking their medications during these periods, and one woman even "went almost two years without m edications because the county ... did not pay for the medicine I needed."
Women encountered other barriers to gaining access to medications, including being ruled ineligible for Medicaid coverage (20 percent), transportation difficulties (12 percent), the distance to the medications site (4 percent), and child care or family responsibilities (4 percent). The women who had been in jail reported great difficulty in keeping up with their medical regimen; one woman noted, for example, that "while incarcerated, my medications were discontinued several times" and another said that when she had been in jail "for the first month they would not give me my medicine."
Only 28 percent of the women reported that they had participated in clinical trials to test HIV/AIDS medications. When asked why they had not participated in clinical trials, 51 percent reported that they had no information about clinical trials and 23 percent said that they were ineligible to participate. Other reasons cited were lack of interest, not wanting to be experimented upon, not wanting to provide the personal information, and fear of adverse pharmaceutical effects. One woman said that she was dropped from a study because she is a recovering addict and relapsed during the trial period. Of the women whose doctors informed them about clinical trials (52 percent), 39 percent said that they had participated in a clinical trial, compared to only 14 percent of women whose doctors did not inform them about trials (p=.0l6).
Women in our study were fairly well connected in terms of their access to information about HIV/AIDS medications and received this information from a variety of sources. Health care providers were the main source of information about HIV/AIDS treatments for 69 percent of women, followed by other people living with HIV/AIDS (42 percent), self-initiated research (38 percent), HIV/AIDS support groups (36 percent), case managers (32 percent), the media (26 percent), and friends and family (14 percent). Women whose physicians informed them about new HIV/AIDS treatments or experimental drugs (77 percent) were more likely to be taking medications. Eighty-six percent of these women were taking medications, compared to only 53 percent of women whose physicians did not inform them.
Compared to their utilization of HIV/AIDS medications, women were far less likely to use alternative therapies. Women reported using prayer most often (46 percent) followed by vitamins (45 percent), massage therapy (16 percent), herbs (14 percent), marijuana (9 percent), and acupuncture (8 percent).
Relationship with Primary Physician or Health Care Providers
Most of the respondents (90 percent) have a primary physician or health care provider from whom they receive their HI V/AIDS care. Most of the women considered this primary health care provider to be an expert in HIV/AIDS-related care; only 12 percent did not know whether their health care provider had HIV/AIDS expertise. Overwhelmingly, women reported that they were satisfied with their health care providers. Indeed, 91 percent said that they would recommend their doctor to a friend or family member. Women also reported consistency of care; 96 percent reported that they usually saw the same health care provider for their care.
In response to the question "what do you value most about your health care provider?" most respondents wanted their provider to be knowledgeable about the latest developments in HIV/AIDS treatments (75 percent), to be friendly (67 percent), and to be an expert in HIV/AIDS-related care (60 percent). Women were less concerned about the provider's gender (29 percent) or race/ethnicity (19 percent).
Most women (65 percent) reported that they were very comfortable with their health care providers. One woman said: "I know beyond a doubt that she really cares about me and my health." Yet, another wrote that, in her experience: "There are not very many doctors who really care." Only one woman reported that her doctor did not know about her HIV status.
Respondents also cited the attributes that they liked most about their doctors. Women rated their physician's openness and honesty about their medical conditions most highly (73 percent), followed by the doctor's ability to fully explain things; women also valued doctors who really cared about them (60 percent), let them make their own decisions (48 percent), really listened to them (68 percent), did not mind lots of questions (70 percent), and took time with them (70 percent).
In addition to physicians, case managers also played an important role in the health care of women living with HIV/AIDS. Eighty-three percent of respondents reported having a case manager and case managers were a source of information about new HIV/AIDS treatments (32 percent) as well as information about ADAP programs (56 percent)
This study was designed to explore women's experiences in gaining access to HIV/AIDS medications, including protease inhibitors. The study yielded some good news about the health care experiences of women living with HIV/AIDS in the Washington, DC metropolitan area. Women were for the most part educated about the ways to detect the virus, HIV/AIDS medication options available to them, and ADAP programs.
Yet, the study yielded more bad news than it did good. Specifically, despite the DHHS (1998) recommendation that people living with HIV/AIDS receive combination therapies, most of the women in this study were not taking protease inhibitors. The finding that so few women were taking protease inhibitors is troubling, but not surprising. It is consistent with other studies' findings that have shown lesser use of protease inhibitors by women, low income people, and people of color (Basile-Ryan and SRLVCU, 1997). Of course, by virtue of their race, class and gender, the women in our study are simultaneously members of groups that have traditionally had the least access to protease inhibitors. Moreover, while 27 percent of women reported that they had participated in clinical trials at some point, only 2 percent reported that they were currently receiving medications through a clinical trial.
Although most of the women in the study had health insurance, women were most likely to be covered by Medicaid than any other form of insurance. This fact may explain the low utilization of combination antiretrovirals and protease inhibitors among women in this sample. The Clinton Administration's recent decision not to expand Medicaid access to protease inhibitors may contribute to the low use of protease inhibitors by women in this study.
Limitations of the Study
The study has limited generalizability because of the convenience and snowball sampling methodologies used. The sample was recruited from HIV/AIDS organizations and health care facilities. Thus, most of the women already had access to care, and may have been more health conscious and educated about the disease than women who do not regularly visit these sites. In contrast to the Basile-Ryan and SRLVCU (1997) findings, that most of the people of color surveyed were unaware of viral loads and t-cell counts, most of the women in this study had had a t-cell count (94 percent) or viral load test (95 percent), and almost half of the sample were participants in the Women's Interagency HIV Study (WIHS). Therefore, they are not representative of most of the women living with HIV/AIDS in the metropolitan DC area. Moreover, because HIV/AIDS services are relatively plentiful in this area, this study's findings may not be relevant to women who live in rural areas or other underserved communities.
The study's use of quantitative research methodology also has implications for some of the study's findings. For example, the present study found that most of the women were very satisfied with their health care providers and their relationships with these providers. These findings depart from the Center's qualitative study with women with HIV/AIDS (Viruell-Fuentes and Wolfe, 1998). In that study, many of the women reported during in-depth interviews that they were dissatisfied with the treatment they received from physicians. The different responses suggest that the methodologies for both studies may have influenced the present study's findings. It is likely that when women are given the opportunity to elaborate on their experiences, as they were able to do in the qualitative studies, they respond in different ways than when they must respond to close-ended items. Similarly, literacy issues also may have influenced responses as most of the women in the study reported low education levels.
This preliminary study's findings point to the need for more studies of women's experiences with HIV/AIDS medications including, but not limited to, factors that influence women's adherence to drug regimens, the role of doctor-patient relationships and communications, physicians' attitudes about the appropriateness of protease inhibitors for their women patients, and the role of women s health decision making. Indeed, it is curious that many women are doing what they want to do with regard to protease inhibitors and that their physicians often are not involved in those decisions.
The fact that so few women in the study participate in clinical trials also should be cause for concern. In addition to denying women access to new experimental drugs, this omission also limits researchers' opportunity to learn about how these drugs work in women. Finally, the study's findings clearly point to the need for Medicaid coverage for protease inhibitors, as large numbers of women in the study have Medicaid coverage, but Medicaid provides limited coverage for protease inhibitors.
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|Author:||Bowleg, Lisa; Wolfe, Leslie R.; Viruell-Fuentes, Edna Amparo; Castaneda, Rosa|
|Publication:||Inaccessible Miracles? Women's Access to HIV/AIDS Medications|
|Article Type:||Topic Overview|
|Date:||Feb 1, 1999|