Despite progress in cancer care, cost and equity challenges still must be addressed

As a physician who has spent his career taking care of people with HIV/AIDS, cancer and various blood disorders, this is an amazing time to be working in these overlapping fields of medicine.

I began my training when roughly half the people diagnosed with HIV were destined to develop cancer, and nearly everyone died shortly after they progressed to AIDS. In resource-rich countries today, HIV care is often as simple as the patient taking one pill daily.

When I started my fellowship in hematology and oncology, few treatments meaningfully modified the natural and devastating progression of metastatic cancer. Most chemotherapy treatments were exceptionally toxic. With a few notable exceptions such as lymphoma or testes cancer, too many patients were destined to die of their disease. The treatments often hastened rather than delayed death. The agents we now take for granted to minimize side effects, including antiemetics, antibiotics, bone-strengthening agents and myeloid stimulants, were not yet available nor routinely incorporated into treatment strategies.

We waged a metaphorical war with the hope our patients could live longer and better. Our objective was to attack our common enemy with the armaments at our disposal, including radical surgery, radiation therapy, and chemotherapy. We told our patients to imagine that chemo resembled small pizzas with a slice cut out for the mouth like figures in the then-popular Pac-Man arcade game. The army was deployed from an intravenous bag, marched through a vein and into enemy lines, and took bites out of cancer. But so often the collateral damage manifested by low blood counts, infections, nausea, and vomiting were more problematic to our patients than our common enemy. And so many patients still died.

I remember vividly one patient I helped care for during my first year out of medical school. He was in his early to mid-20s and diagnosed with metastatic testes cancer. He had a strong interest in non-traditional supplements. Even 30 years ago, his cancer was highly curable. With his first treatment cycle he suffered intractable nausea and refused further chemotherapy. Despite the efforts of our team, including my senior resident, our attending oncologist, a social worker, and psychiatrist, our pleas were ignored. He chose to seek care in Mexico, trying laetrile and dying a few months later. Sadly, this was a pattern I saw repeated over the years.

I reflected on this and more as I put thoughts to paper while flying home from the recent annual meeting of the American Society of Hematology (ASH). The meeting included several big and important themes. The National Cancer Institute announced it is revamping how it conducts clinical trials so more people, including children and adults with rare tumors, can have access more quickly to potentially life-saving therapies.

Moreover, companies like Amazon and Microsoft were present. They are entering the cancer field by introducing artificial intelligence (AI) to solve complex medical problems. I heard a presentation by experts from the Cleveland Clinic who explained that by using AI and genetic sequence data, physicians there can better predict which patients with myelodysplasia are destined to develop acute leukemia. By capitalizing on this information and using new drug targets, we were told, many patients can improve their critically low blood counts and be less likely to succumb to acute leukemia. I also heard how “machine learning” is developing algorithms to more expertly curate medical information, enhance the ability of scans to detect cancer and more efficiently deliver radiation therapy to difficult-to-target tumors.

One symposium focused on physicians who use social media to connect with colleagues and patients in novel, exciting and impactful ways. As a doctor who works with patients with cancer and HIV, I have struggled to get the word out about clinical trials for this specific and small group of individuals. It was inspiring to hear how one physician used social media to inform patients about a clinical trial that will examine the benefits of yoga for individuals with the rare blood disorder polycythemia vera. In seven days, hundreds of patients sought to enroll. I was excited to learn how this approach can keep me better connected to my patients and thought leaders in my field.

While I marvel at how far we’ve come, challenges related to the cost of care and care equity remain.

  • There are huge disparities in cancer care because of challenges with health insurance coverage, racial and economic issues, misconceptions regarding what is healthy behavior and what is not (for example, vaping), and difficulties rolling out commonly accepted screening procedures for early diagnosis of breast, lung, colon and cervical cancers.
  • Many of my patients must make therapeutic lifestyle changes and embrace harm-reduction strategies despite scarce resources, such as social services and psychiatric care, to make these changes a reality.
  • While many novel drugs are more effective and often have fewer side effects than the drugs they are supplanting, the newer ones have this in common – extremely high prices. For example, CAR T cells are effective for some cancers but cost $1 million per treatment. Several surveys have shown that for many patients their biggest concern is not how long they will live but how they can afford treatment without leaving their families bankrupt. Thus, a new term has emerged when describing treatments – “financial toxicity.”

I worry the high cost of care will drive inequities even further. Determining how best to deliver appropriate care even-handedly, efficiently and affordably is one of the largest, yet least discussed, challenges in cancer care. This is the elephant in the room. It is a potential barrier to the remarkable strides underway in medicine.

David M. Aboulafia is a hematology-oncology physician.

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