Take Home Message
  1. Overall, utilization of palliative care is low among people with HIV (PWH) with cancer.

  2. PWH diagnosed with advanced stage malignancies, particularly those with lung and colorectal cancer, are less likely to receive palliative care compared to their HIV-negative counterparts.

  3. PWH with non-metastatic disease are more likely to receive palliative care, reinforcing prior data that curative treatment is not being offered equitably.

With the widespread use of highly active antiretroviral therapy (HAART), people with HIV (PWH) in the United States (US) are living longer and are aging into demographic groups in which chronic conditions such as cancer more commonly occur. In the US, sixty-three percent of PWH are now over the age of 45.1 In the US, cancer is a leading cause of morbidity and mortality among people with HIV.2 The shift in age distribution has also led to a shift in the type of malignancies most frequently observed among PWH in the US.

Non-Hodgkin’s lymphoma and Kaposi’s sarcoma, collectively known as AIDS-defining cancers, were the most common cancers seen among PWH in 2010. However, prostate and lung cancers, which are classified as non-AIDS-defining cancers, are projected to be the most common by 2030.3 Not only do PWH have higher rates of these cancers, but they are also more likely to experience higher, stage-adjusted, cancer-specific mortality compared to their HIV-negative counterparts.4 The reasons for these inequities are an active area of research.

One important contributing factor is the disparity in the type of treatment offered to cancer patients with HIV. Studies have shown that PWH are less likely to receive treatment with curative intent compared to their HIV-negative counterparts, even after adjusting for sex, age and year of diagnosis, race, and ethnicity.5–9 These inequities have continued to persist in recent years, specifically for cervical, lung, and colon cancer, and thus remain an important issue for PWH.10 Several hypotheses exist as to the reasons for this disparity, including a lack of treatment guidelines for PWH with cancer, exclusion from cancer clinical trials, uncertainty on the part of oncologists in regard to potential toxic drug interactions between HAART and cytotoxic drugs, paucity of large outcomes data for PWH and cancer, and mistaken perceptions regarding the longevity of PLW in this era of sophisticated and active antiviral options as well as perhaps the perceived risk of HIV progression.

Another underexplored area of cancer treatment receipt among PWH is the use of palliative care, which has been shown to improve quality of life, symptom burden, mood, satisfaction with care, survival, and health care cost.11–14 In 2014, the National Comprehensive Cancer Network (NCCN) recommended that cancer patients should be referred to receive palliative care from the time of diagnosis and along the entire cancer care continuum to the end of life.15 This introduces a new framework wherein a lack of early inclusion of palliative care may lead to inequitable receipt of cancer treatment.

In a study comparing the use of palliative care among patients with cancer living with and without HIV in the US, researchers collected data from the National Cancer Database (NCD) which included over 90 million patients between the ages of 18 to 90 years-old, diagnosed between 2004 and 2018.16 The palliative care definition provided by the NCD meant that any form of treatment that was not with curative intent, including surgery, radiation, chemotherapy, or pain management would be included in this category. The most common neoplasms observed among PWH in this cohort were diffuse large B-cell lymphoma (DLBCL), Kaposi’s sarcoma, and lung, colorectal, and anal cancer. These patients also tended to be younger on average (57 vs 64 years) and more likely to be diagnosed with stage 4 cancer compared to their HIV-negative counterparts (23% vs 16%). PWH in this study were also more likely to be male, non-Hispanic black, low-income, and less likely to be privately insured.

A major finding of this study was that the odds of palliative care use were 25% higher among PWH. When stratified by stage of diagnosis however, two divergent trends were observed. Firstly, among those diagnosed with early stage-cancer (stages I through III), PWH had 96% higher odds of receiving palliative care versus those without HIV. On the other hand, among those diagnosed with stage IV cancer, PWH had 30% lower odds of receiving palliative care compared to their HIV-negative counterparts. Potential barriers to appropriate palliative care in this cohort include limited availability of resources, cultural or financial barriers, as well as miscommunication or misunderstanding of the advances that have taken place in the care of PWH over the past several decades. Persistent stigmatization of PWH also may contribute to this divide.

When further stratified by cancer site, PWH with stage IV metastatic lung and colorectal cancer were 20% and 28% less likely, respectively, to receive palliative care, while those with early stage colorectal and breast cancer were more likely to receive palliative support. Similarly, among those with early-stage head and neck or anal cancer, PWH were more likely to receive palliative care compared to their HIV-negative counterparts. As for DLBCL, PWH had higher rates of palliative care use regardless of stage.

The researchers also analyzed the relationship between receipt of palliative care and curative cancer treatment. Compared to those without HIV, PWH had 49% lower odds of receiving any curative treatment. Upon further stratification, the investigators showed that PWH who did not receive palliative care had 48% lower odds of receiving curative treatment. As for those who did receive palliative care, they were also less likely to receive curative treatment compared to those without HIV, suggesting that PWH were receiving palliative care in lieu of curative treatment. These findings reinforce prior data that curative treatment is not routinely offered to PWH in an equitable way.17,18

Further research is needed to address these inequities, recognizing the multilevel influences on the quality of cancer care delivery within the US. One step in the right direction is to contextualize this population of PWH who are largely non-Hispanic black men, men who have sex with men, Medicaid insured, and of low income. Being aware of the marginalization this heterogeneous population may face owing to these intersecting identities and developing strategies to address them at the level of the patient, provider, care team, and family is crucial. Interventions such as the development of clear and expanding guidelines on cancer treatment for PWH, integration of multidisciplinary teams including HIV physician and pharmacy specialists and the broadening of teams to include medical social workers along with financial counselors who can help mitigate financial toxicities associated with cancer care are necessary to improve care for this population. Continued efforts to broaden education and clinical trial opportunities are important for both PWH and those clinicians who are involved in their care. Studies incorporating patient-reported outcomes are a promising approach to improving quality of care and quality of life for PWH and cancer. Strong advocacy is also an ongoing need for this group who are often marginalized and who need further information about their personal risk of developing cancer, factors that can mitigate this risk, and what can be done if they are diagnosed with a malignancy.


Conflicts of interest

All authors: No conflicts of interests

Funding

N/A

Ethical statement

N/A

Acknowledgments

The authors wish to thank Virginia M. Green, PhD, for her expert editorial review of the manuscript.

Authors contribution

I. conception and design: All authors
II. data collection and assembly: All authors
III. data analysis, manuscript writing: All authors

All authors have approved this manuscript