🍎 Attention: New York. This is For You!
As most of you know I was diagnosed with Stage IV Triple Negative (TNBC) breast cancer in 2017. Given just a 4% chance of survival, I participated in a groundbreaking Phase 1 clinical trial at NYU and made medical history (1)
I’ve been interviewed multiple times about my journey, with the highlight reels often covering the importance of self advocacy, inclusion, medical bias, informed decision making, the value of precision oncology and access to biomarker testing.
What has not been covered is one of the most important decisions I faced as a patient. A decision that effects thousands of patients everyday. How are is your treatment going to be covered? How did I plan on paying?
What I can share is that like a lot of you, I was in serious trouble. Trying to figure it out, and sleepless nights and moments filled with stress. I had exhausted all my savings and could no longer afford my insurance (2) premium. A few months prior. I’d been let go from my new job, just four weeks short of FMLA (3) protection. To keep my insurance coverage I had to pay $610.00 per month! My situation was just awful.
One day I was sitting in the exam room waiting for my test results (something I routinely did before I went to the infusion center), when a clinical trial coordinator walked in, and informed me that NYU had an emergency fund that would cover me short term, but the bottom line was that I was going to have to get some insurance.
Although the treatment drugs were free as long as I participated in the clinical trial, many aspects of my care were not and I needed to figure something out. quickly.
What the clinical research budget paid for was:
The Investigational Drugs: The combination regimen of NKTR-214 (bempegaldesleukin) and Opdivo (nivolumab).
Protocol-Specific Testing: Extra blood draws for investigational research biomarkers or pharmacokinetic data collection.
Mandatory Excess Scans: Any baseline or follow-up tumor response scans (like specific RECIST 1.1 CT/MRI intervals) required strictly for trial data rather than standard tracking.
What was not covered (costs I was responsible for):
Routine "Standard Care" Procedures: Regular oncology physician consultations, standard complete blood counts (CBC), and metabolic panels that you would have needed even if you were on a standard FDA-approved treatment plan.
Management of Side Effects: Managing common adverse events associated with this specific PIVOT-02 immunotherapy combo (such as medications or clinic visits for flu-like symptoms, rash, fatigue, or hypotension). If a side effect required standard outpatient supportive medications, those were filled using your standard prescription insurance plan.
Emergency/Hospital Complications: Severe immune-related toxicities or hospital stays requiring standard medical management were billed through standard healthcare insurance networks
So how did I pay for it.? Well, New York State has a special insurance program that assists patients diagnosed with Breast, Cervical, Colorectal and Prostate cancer. The Medicaid Cancer Treatment Program (4) (MCTP) s a Medicaid program for eligible persons who are found to be in need of treatment for Breast, Cervical, Colorectal or Prostate cancer (and in some cases, pre-cancerous conditions of these cancers).
To be enrolled in the MCTP, an individual must complete an application with a New York State Department of Health Cancer Services Program (CSP) trained designee, referred to as a Designated Qualified Entity (DQE). A DQE is a person designated and trained by the New York State Department of Health as a "Qualified" entity, for the purpose of assisting individuals to complete the MCTP application.
Once an individual is enrolled in the MCTP, full Medicaid coverage is provided for an initial period of enrollment as determined by the type of cancer or pre-cancerous condition being treated. Recertification is required yearly, if the individual is still in need of treatment, at which time eligibility is reassessed. Enrollees must receive services from a Medicaid enrolled provider in order to have their services covered. MCTP coverage is limited to the individual enrollee and cannot be extended to family members or dependents.
So, just to reinforce, you can’t just walk into a medicaid office and sign up for this. You have to go to the MCTP web page, search the region you live in and look up the service provider who is trained to fill out the application. I was lucky enough in 2017 to find a kind woman who signed me up when I went to the Avon Center at Columbia Presbyterian in Washington Heights.
I am grateful that the process went smoothly and I received coverage needed to continue my life saving treatment. This program is a fantastic resource for patients who may otherwise face a huge challenge to care. So if you or someone you know, has been diagnosed with Breast, Cervical, Colorectal or Prostate cancer and are in need of insurance coverage and live in New York State please visit the MCTP for information on eligibility details.
Hugs.
Karen
Resources sited include: (1) - NYU Perlmutter Cancer Center, (2 & 3) - US Dept. Of Labor, (4) - NYS Dept. Of Health
