“In a span of a calendar year, I went from breast feeding to breast cancer,” said Melanie Nix, MBA.
Nix and her story about dealing with her diagnosis with triple-negative breast cancer and its many cascading effects were the emotional centerpiece of a panel discussion about racial disparities and breast cancer at the AMCP Nexus 2022 meeting in National Harbor, Maryland.
The hourlong discussion among Nix and the three other panel members touched on a range of topics, from screening to prior authorization to financial toxicity to clinical trial enrollment. The panelists also took up the topic of social determinants of health (SDOH) from various perspectives.
Latoya Hill, M.P.H., a senior analyst at the Kaiser Family Foundation, traced racial dispariteis in health to redlining, which she said led to residential concentration of Black people and poverty and cut those areas off from resources. “What we see are that areas that were redlined, these areas have two times higher rate of breast cancer mortality than other areas. So we do know that geography does matter and play a role in terms of your outcomes.”
The other two panelists were Karen Winkfield, M.D., Ph.D., executive director of the Meharry-Vanderbilt Alliance who practiced medicine as a radiation oncologist, and Laura Bobolts, Pharm.D., senior vice president of clinical strategy and growth at OncoHealth, a digital health company that specializes in cancer care. Porscha Showers, a principal medical scientist at Gilead, was the moderator. Gilead sponsored the session.
Nix, who is co-founder of the Breast Cancer Comfort and chief visionary or Diagnosis to Destiny, described an early experience with a doctor before she was diagnosed with breast cancer in 2008. She said the doctor was “very dismissive” of her concern that she might be at high risk of developing breast cancer despite her having a strong family history of the disease, starting with her mother, who was diagnosed when she was 36, and going back five generations. Nix said she fired that doctor and moved on to another one who took her worries seriously and arranged to have her start screening mammograms when she was 28. Later, a genetic test was positive for the mutations in the BRCA1 gene that are associated with a higher risk of breast and ovarian cancer. After her diagnosis with triple-negative breast cancer, Nix said she had a bilateral mastectomy, bilateral oophorectomy and treatment with chemotherapy.
Nix said she was thankful for the treatment plan and to have lived past age 50 in contrast with when many of her relatives who died at a younger age. “I am grateful to be here,” she said.
But she also discussed the struggle that she and her husband had with medical bills even though their health insurance had relatively thorough benefits.
They had saved for a rainy day, she said. “We needed to save for a rainy season.”
Hill reviewed some of the incidence and mortality for breast cancer. She shared statistics showing that although the incidence of breast cancer is higher among White women, the mortality rate is higher among Black women. The gap in screening rates has closed so Black and White women are comparably screened, Hill said, but there are still disparities in outcomes that are the result of delays in diagnosis and treatment and differences in access to treatment.
Winkfield spoke about a program in Delaware aimed to increase colon cancer screening among Black people that also increased diagnosis and treatment. The positive results show that efforts to increase cancer screening can’t be done in isolation. “It is not just about screening,” Winkfield said. “We have to have pair it with diagnosis and treatment.
Winkfield also stressed the importance of clinical trials (“enrolling in a clinical trial is getting tomorrow treatment’s today”) and how Medicaid rules were changed recently so people in Medicaid can enroll in trials without losing Medicaid coverage for the care that they receive outside the trial. However, Winkfield cautioned that implementation of this change occurs at the state level and that states might not follow through. Hill mentioned the Henrietta Lacks Enhancing Cancer Research Act, which requires reports on government-funded cancer trials that must include information about the enrollment of underrepresented populations.
Bobolts discussed the role of insurers and the importance of viewing patients as individuals when it comes to coverages. She said doctors can help by providing documentation of patient circumstances that might justify a treatment and result in expanded access to care. Prior authorization can serve as another pair of eyes and result in patients getting less expensive but equally effective medication, such as cheaper biosimilar instead of its reference product, she said.