My first thought was, “I’m going to die, and my son is only 9 years old.”
As a Black woman who has seen cancer take a heavy toll in our communities, hearing my own diagnosis was terrifying. But after months of uncertainty and repeated doctor visits, finally having answers was empowering. It meant I could begin taking steps to defeat the disease.
Thankfully, my lung cancer was caught early and I had access to biomarker testing, a tool that gave my doctors critical information about my cancer and made it clear what treatment was best suited to fight my unique diagnosis, should it return. It gave my providers a roadmap while giving me hope.
However, millions of New Yorkers could lose access to that same opportunity if the state legislature rolls back Medicaid coverage for biomarker testing. This proposal would effectively create a two-tiered system: one for those with private insurance, and another for limited-income New Yorkers who rely on Medicaid, resulting in two very different survivorship outcomes. At a time when Black New Yorkers are already more likely to die from cancer, stripping away clear access to this revolutionary testing would resurrect access barriers and threaten efforts to ensure that everyone has the same opportunity to be healthy and cancer-free. That’s the opposite of advancing health equity.
Biomarker testing is one of the most important recent advancements in cancer care and the treatment of many other diseases, including those that, historically, are hard to treat. It looks at a patient’s tissue, blood, or other samples to provide doctors with essential information to accurately diagnose the cancer, determine its stage, and choose the most effective treatment for that specific patient. This approach, known as precision medicine, can connect patients to treatments with fewer side effects, better quality of life, and more time with loved ones, compared to traditional trial-and-error approaches.
Without Medicaid coverage criteria for biomarker testing, many New Yorkers could be forced to pay out of pocket, take on debt, or go without this game-changing testing. This would be a profound health injustice, considering that nearly 60% of all cancer drugs approved in the last five years require or recommend biomarker testing before use. Without this tool, patients will not be matched with the latest and, often, most effective drugs that could potentially save their lives.
During my cancer journey, and while caring for my husband after his prostate cancer diagnosis, I noticed that most of the patients in my Bronx community I spoke with were diagnosed at advanced stages, when treatment options are more costly, and survival rates are lower.
I have since founded Healing the Bronx to raise awareness about screening and encourage participation in clinical trials. I understand the historic mistrust that exists in our communities, but I also know that our representation in research matters.
Clinical trials are how we develop better treatments. For example, the drug that targets my biomarker, and that I will turn to if my cancer returns, is currently being studied in a clinical trial. To make sure new drugs and therapies are safe and effective for everyone, people from diverse racial and ethnic backgrounds need to be included. Many of today’s most promising clinical trials rely on biomarker testing to identify eligible patients. Without access to biomarker testing, patients cannot participate in these cutting-edge clinical trial options.
The impacts of biomarker testing extend far beyond cancer care. It also helps treat other diseases and conditions, some of which disproportionately affect Black families, including sickle cell disease, lupus, and preeclampsia. There are also exciting research developments in cardiology, Alzheimer’s disease, Parkinson’s disease, and other conditions. Biomarker testing can also identify treatments that are likely to be ineffective or unnecessary, saving patients precious time and money.
One hundred organizations, including the American Cancer Society Cancer Action Network, sent a letter to state house and senate leaders noting that saving lives from diseases like cancer and advancing health equity increasingly involves the use of precision medicine alongside biomarker testing. While they recognized that our state legislators face difficult budget decisions stemming from deep federal cuts to Medicaid, they said rolling back Medicaid coverage for biomarker testing could ultimately cost more, in health care expenses and lives.
Eleven years ago, biomarker testing unlocked a path forward for my continued survivorship and gave me true peace of mind. Thanks to that, I got to live and watch my son grow up without fear and, instead, with real hope. All New Yorkers, regardless of income, race, zip code, or insurance type, deserve the same chance. I hope our state lawmakers remember that when they finalize the budget.
Colette Smith is a lung cancer survivor and volunteer with the American Cancer Society Cancer Action Network living in the Bronx.