Jeff S., MA

I am here today asking you to protect the NIH, CDC, and improve access to quality, affordable healthcare coverage.

In 2010, when I first heard from my doctor that I had Stage 4 lung cancer, I was shocked to learn online that I had only a 50% chance of living more than a year. I felt a deep sense of shock and sadness for my 8-year-old daughter, Sophie, my 6-year-old son, Noah, and my hardworking wife, Tina, who was already giving 100% at home and at work. I had survived brain surgery to remove an orange-sized tumor and a round of whole-brain radiation, which I had assumed was for brain cancer. But it turned out to be lung cancer that had metastasized to my brain, and that diagnosis hit me hard. I felt devastated thinking about the things my kids wouldn’t do with their dad.

At that point, my thoracic oncologist told me the best way to treat my lung cancer was with rounds of platinum-based chemotherapy. The first round was no problem. I felt fine and returned to work the next day. I had renewed hope that I might end up okay, because the chemo didn’t seem that bad. A couple of cycles later, however, I realized the chemo effects were cumulative. I needed more and more recovery time after each round, and I was missing more and more work and family time. After the fifth chemo cycle, I felt horrible all the time, and my cancer had not improved. It had been seven months since my diagnosis, and I was worried I wouldn’t make it beyond a year, as those online statistics suggested.

Thankfully, through genetic testing of my tumor, it was discovered that I had a specific ALK mutation. My oncologist told me there was a new treatment and clinical trial for my mutation. I qualified for the trial and was randomized into the study drug arm of the trial, instead of continuing chemo treatments in the standard-of-care study arm. My life changed that day! I took two pills a day and had limited side effects. I returned to work full-time and was able to re-engage with my family. We enjoyed vacations, and I was able to attend my children’s baseball games, dance recitals, and school events. I felt free from the horrifying mortality statistics I had seen when I was first diagnosed.

I was able to stay in that trial for 3 ½ years until my lung tumor showed signs of growth. Within a few weeks, I was enrolled in another clinical trial for the next generation of ALK-specific lung cancer treatment. I started the trial on the highest dose of the medication, but unfortunately, my liver function began to decline as a side effect of the drug. Luckily, the study allowed the medication dose to be lowered, and I was able to stay on that lower dose for over seven years. Eventually, the second-generation drug stopped working, and tumors started growing in my brain, causing stroke-like symptoms on my left side. I had a second brain surgery to remove the new tumors and was put on a third-generation ALK-specific treatment that had recently been approved. This generation of treatment had the added benefit of being better able to cross the blood-brain barrier, which should help control the growth of future tumors in my brain. I have been on the third-generation drug for 4 years and 8 months now, and it has been a literal life-saver! I am living side effect-free and have not had any disease progression.

The NIH has been a strong supporter of ALK mutation research. When it was first suggested that ALK-targeted drugs could be made, the NIH participated in and funded the research. When ALK drug resistance emerged, they began studying resistance and advocated for additional drug development. In the recent past, they are working on addressing ALK drug resistance in addition to supporting research on the next generation of ALK drugs.

My current medication costs over $26,000 per month. For years, I was insured through my employer’s group insurance, but when I was laid off from my job in 2024, I had to find new health insurance. Due to my medical history, I am nearly uninsurable in the private market, with quotes for coverage reaching around $10,000 per month. Thankfully, I live in Massachusetts, where I was able to take advantage of the Massachusetts Health Connector, the state’s health insurance marketplace. Through the marketplace, I found comprehensive and affordable BCBS coverage in 2025 that allowed me to continue receiving my cancer treatment. Heading into 2026, I found that my monthly premium was scheduled to increase 23% or $600 per month.  Due to the large increase, I submitted multiple rounds of paperwork, over several months, to try to qualify for a premium subsidy (due to my lower 2025 income and my recent disability designation.) All that work qualified me for a Medicaid plan. The Medicaid plan required pre-authorization for ALL of my appointments and treatments and, ultimately, may not have covered many of my necessary services or doctors. As I did not want an insurance company to be ‘in charge of’ what services I did or did not need, I decided to select a new BCBS health plan with similar monthly premium costs to my 2025 plan, but with a significantly higher deductible and out-of-pocket costs.  

Everyone needs quality, affordable healthcare coverage to be able to access and benefit from the NIH and CDC discoveries. Protecting the NIH and CDC is essential, not just for those of us in the lung cancer community, but for everyone. We need to ensure funding for these critical agencies so they can continue their important work for the well-being and health of all Americans.