Bound by Love and Care
Benjamin
State: Connecticut
Congressional District:
Diseases
Blood Disease, Cancer, Endocrine Disease
Issues and Challenges
Benjamin has encountered: Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues
My Story
My wife was diagnosed with stage 4 endometrial cancer. In order to care for her to the best of my ability, I went to an orthopedist in 2019 to address a nagging pain and weakness in my left femur. The orthopedist was very astute in recognizing the tell-tale signs of multiple myeloma. I visited my wife’s oncologist where the doctor verified the diagnosis; I immediately began a three drug chemotherapy regimen accompanied by monthly bone strengthening infusions. I am a dairy farmer who has been blessed with an incredible workforce. They really stepped up and allowed me to remotely manage the dairy as it was dangerous for me to be in with the cows–multiple myeloma famously weakens bones and increases the risks of fracture.
At the time I was serving on two national cooperative boards that each facilitated my continued service. At the end of my induction therapy, I was qualified for an autologous stem cell transplant. At this time, COVID had overwhelmed our hospitals. I had to continue on the induction therapy until the hospital had the breathing room to host my transplant. It was a scary time. My cells had been harvested in March and I finally began my transplant at the end of May. I was very lucky to leave the hospital 11 days later, ready to begin my 100 days of regaining strength, a key period following transplant for multiple myeloma patients. The world had shut down so besides having a very clean home to avoid exposure to any maladies as my immune system reinvented itself, I had no interaction with the outside world. My wife was in a brief remission and was an incredible caregiver during my recovery. Meanwhile, as I became stronger, she was beginning a difficult journey during a relapse that involved clinical trials and several lines of therapy. Caring for Debbie became the most important part of my life as she had never stopped taking care of me–until she was unable to. Debbie passed away in February, 2023.
My Motivation and Inspiration
Being cared for and having the privilege of caring for a loved one has taught me that the responsibility to advocate lies with those who are able in order to give a voice to those who are not able to speak for themselves.
I felt like I had it all pretty much under control. Despite being diagnosed with multiple myeloma in the wake of my wife’s diagnosis of stage 4 endometrial cancer, we had insurance and we were both getting good medical attention. We stood each other up–literally–not realizing the full extent of emotional limits and how they might be breached. And that is a very real cliff. I did not see mine coming as I slowly wound through the standards of care that in my case led to a stem cell transplant. Our COBRA ran out and we switched to a very expensive policy on the health exchange. The change was awkward but manageable. Then came Medicare. Following sign up, we got a quick education on the copay for Tier 5 drugs. Revlimid was going to be about $17,000 per year out of pocket. After paying 3,500 dollars a month for several months, we reached a milestone where we could be considered for a grant based on medical bills as a percentage of income.
As the end of year approached, it came time to reapply for the grant–the odyssey of not knowing had begun. There were several opportunities to consider but all required coordination that exceeded my bandwidth now that my wife was exhausting her lines of therapy. It all caught me off guard as I attempted to provide what was needed for the grant programs, eventually finding that the drug plans were dynamic and did not cover the drug at all. That led to applying for Lenalidomide to be added to my formulary. When I began this journey, I did not realize that I needed to become an expert at figuring out what I needed to do and where I needed to go just to get the drug. The Medicare drug plans had changed–fortunately for me they were capped much lower, but what happens if a drug is not in the formulary? It was an emotional nightmare but I made it through. I landed where I needed to in order to receive the maintenance treatment recommended by my doctor.
Although I landed on my feet, I felt I was robbed of precious time with my wife. My energy was zapped by the year-end fiasco of one grant ending and the next opportunity hurtling into the unknown. This has been the driving force of my advocacy–we need to let patients focus on their health and not be sidelined and delayed by a constantly changing and unknowable landscape.
We should not have to compromise optimal medical care for economic or political convenience–we all benefit when we can focus on taking care of ourselves. When I am fortunate to be in a good place physically, it gives me the capacity to help others so they can concentrate on optimizing their lives. Patients commit to a complex path–the rest of us need to step up to help them succeed. We are worth the cost of allowing us, alongside our doctors, to decide which treatment path is best. On my good days I raise my voice. On the lesser days, I hope others will speak for me.
I encourage support for an oral parity bill would eliminate the disparity in oral drugs.
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