Inclusive Cancer Care: Rethinking Patients Living with HIV and Cancer

Short abstract

HIV treatment is complex and has changed since the early years of the epidemic, especially as relates to treatment options for patients with cancer. This article focuses on disparities in cancer treatment care for people living with HIV.

The story of human immunodeficiency virus (HIV) is both a modern medical triumph and an ongoing public health crisis. On one hand, the advent of effective antiviral therapy (ART) has allowed people living with HIV (PLHIV) who initiate therapy in a timely manner, adhere to therapy, and have access to medical care to have near normal life expectancies 1, 2 and negligible risk of transmission after achieving a nondetectable viral load 3. On the other hand, antiviral coverage has not yet reached national goals, and recent HIV resurgences have been noted, particularly in young minority men, drug‐injection users, and people in the southern U.S. 1.

Cancer has been a part of the HIV epidemic from the beginning, with early reports describing cases of Kaposi sarcoma in the context of opportunistic infections associated with HIV/AIDS 4. The Centers for Disease Control and Prevention (CDC) went on to classify three cancers as “AIDS‐defining”: Kaposi sarcoma, non‐Hodgkin B cell lymphoma, and cervical cancer. In addition to these AIDS‐defining cancers, lower mortality and improved longevity among PLHIV have led to rises in non‐AIDS‐defining malignancies in this population, with a three‐fold increase since 1991 5, 6.

Unfortunately, studies have shown that patients living with HIV and certain cancers, including lung, breast, and prostate cancer, have worse overall and cancer‐specific survival than uninfected people 7. One important contributor is lack of cancer treatment among some patients living with HIV and cancer. Our prior work using large databases, such as the National Cancer Database and the HIV/AIDS Cancer Match Study, demonstrates that PLHIV are significantly less likely to receive any cancer treatment—defined as chemotherapy, radiation, or surgery (with sensitivity analyses including hormone therapy for breast and prostate cancer)—compared with uninfected individuals with the same type and stage of cancer 8, 9, 10. The reasons underlying these major differences in cancer treatment rates are just beginning to be explored; however, our preliminary research and clinical experiences with patients and providers have found HIV‐related stigma in the cancer care context to be an important contributor. In this article, we describe this phenomenon to improve awareness of HIV‐related stigma among cancer care providers.

Barriers to Care Among People Living with HIV and Cancer

In managing cancer care among PLHIV, it is important for providers to consider their own preconceptions about this population. Social determinants of health, including low income, no insurance or underinsurance, low education level, employment instability, and a lack of social support, are critical barriers to cancer care affecting some, but not all, PLHIV. The U.S. HIV population is heterogeneous, and people with both HIV and cancer face unique challenges in navigating cancer treatment services.

In our experience working with and studying PLHIV and cancer, one unique barrier has been exceedingly common: the experience of HIV‐related stigma. Anticipated stigma, defined as the fear of stigma that may occur if one's status becomes known, can create major barriers to the management of one's cancer care. Anticipated stigma includes the fear that if others learn of their HIV status, it may lead to discrimination in the health system or lower quality cancer care. As a result, patients may hide their HIV status from their closest family, friends, and health providers, even years after they receive their diagnosis. It is important to note that stigma affects PLHIV from all socioeconomic and racial backgrounds, irrespective of other cancer care barriers, and has potential to erode the therapeutic alliance between patient and oncologist. In other words, HIV‐related stigma adversely impacts receipt of cancer treatment.

The Impact of Provider Preconceptions on Cancer Care Decisions

Unfortunately, physician self‐reported behavior corroborates these patient‐reported concerns. Modern retrospective and prospective studies have shown that treatment efficacy and tolerability of cancer therapy are similar among PLHIV as in the general population of cancer patients 11, 12, 13, 14. However, in a survey of 500 U.S. medical and radiation oncologists, 23% reported they would not offer standard cancer treatment to PLHIV, even to those with well‐controlled HIV infection 15. Additionally, 40% of oncologists believed cancer treatment was less effective in PLHIV and cancer and that these patients were less likely to be adherent with cancer therapies. Providers with these perceptions of PLHIV were also less likely to offer the standard cancer treatment regimen for patients described in hypothetical case scenarios.

The landscape of HIV treatment is complex and has shifted greatly since the early years of the epidemic, which may lead to lack of clarity about modern cancer treatment recommendations. Some oncologists may have completed their training at a time when few effective treatment options were available for PLHIV and when cancer in PLHIV was the result of profound immunosuppression, thereby limiting cancer treatment options. Additionally, early reports of cancer treatment in PLHIV in the pre‐ART era showed increased treatment toxicity 16. As a result, these providers may be overly cautious in offering treatment because of misinformation about modern HIV management and tolerance of cancer therapy. Similarly, clinicians trained in a more contemporary period may not be as familiar with the complexity of HIV management in patients undergoing cancer therapy, particularly drug‐drug interactions between cancer and antiretroviral therapies, HIV surveillance during cancer therapy, and treatment of immunosuppression in the setting of HIV. These knowledge gaps may be exacerbated for clinicians practicing in areas of low HIV incidence, where cases of PLHIV and cancer may be uncommonly encountered.

Negative stereotypes about PLHIV, and resulting therapeutic nihilism regarding cancer care, can impact treatments delivered and cancer outcomes. As explained by Kay et al. in their discussion about stigma in PLHIV, assumptions that all PLHIV have adherence challenges, low health literacy, risk behaviors, and adverse attitudes toward health care is not reflective of the diverse HIV population 17. Instead, PLHIV face differing and overlapping stigmas related to race, sexual orientation, and socioeconomic status. Thus, enacted or anticipated HIV‐related stigma may exacerbate disparities by both alienating patients needing additional support and denying therapy to those able to undergo cancer treatment without challenges.

Considerations for Patients Living with HIV and Cancer

A cancer diagnosis following a pre‐existing HIV diagnosis represents a substantial cumulative burden, with potential consequences for one's physical, financial, social, and emotional well‐being. HIV‐related stigma causes additional distress and perpetuates inaccurate stereotypes of people living with HIV. Consequently, many PLHIV face intersectional stigma, or the presence of multiple, overlying stigma classifications occurring in the same person or group 18. By considering and acknowledging unconscious drivers in our cancer treatment decision‐making with PLHIV, physicians can help disband this stigma and improve our ability to deliver inclusive and comprehensive care to PLHIV and cancer.

Using standard cancer management paradigms for this population, such as the recently published National Comprehensive Cancer Network (NCCN) guidelines for cancer treatment in PLHIV 19, can also mitigate unconscious bias. Screening guidelines for non‐AIDS‐defining cancers specific for PLHIV do not yet exist, but PLHIV are more likely to present with advanced stage cancer 20. Additionally, previous studies suggest that PLHIV without regular access to health care are less likely to receive cancer prevention services 21. Thus, use of standard cancer screening and early detection practices must be improved in PLHIV. In some cases, the optimal screening frequency may be more frequent for PLHIV given increased risk of developing certain cancers, such as lung or cervical cancer 22. This is an active area of ongoing research.

In the previously discussed survey study, few oncologists reported active collaboration with infectious disease doctors in the management of care for PLHIV 15. As recommended in the NCCN guidelines, oncologists should communicate with HIV specialists to comanage HIV and cancer, as well as to determine optimal treatment regimens. Of critical importance is communication between HIV specialists and oncologists to avoid potential drug‐drug interactions and to discuss prioritization between HIV and cancer treatment 19, 23. A team‐based approach also can improve relationships with patients, who will have more trust and confidence that both their HIV and cancer are being appropriately managed.

Next, more research must be done to better understand underlying drivers of the observed cancer treatment disparities in PLHIV. Specifically, future studies should evaluate patient‐, provider‐, and health system‐level barriers that exist this population, as well as test solutions to mitigate these barriers. Additionally, clinical research must be more inclusive of PLHIV and cancer to study this population, which has increasing cancer incidence yet also high exclusion from participation in trials 24. Inclusion of PLHIV in cancer clinical trials will additionally improve physician confidence that treatments are safe and efficacious and will enhance shared decision‐making with patients 25. Guidance on appropriate inclusion and exclusion criteria related to PLHIV are available through the American Society of Clinical Oncology, the Food and Drug Administration, and the National Cancer Institute 25, 26, 27.

Finally, improved outreach in the HIV community to facilitate prevention, screening, early detection of symptoms, and linkage to treatment in this population is necessary. Patients and providers together need to advocate for PLHIV to ensure equitable access to both cancer and HIV detection and treatment services.

Conclusion

PLHIV have lower rates of cancer treatment, which may be contributing to worse survival in certain cancer types. Underlying drivers of this disparity have been minimally studied, but misconceptions and stigmas about the U.S. HIV population among treating physicians may factor into cancer treatment decisions. The population of PLHIV in the U.S. is heterogenous, and cancer care must be personalized and collaborative, engaging both the patient and their HIV care team. Only then can we begin to reduce cancer treatment disparities and improve cancer outcomes in people living with HIV.

Disclosures

The authors indicated no financial relationships.