“My energy was just gone,” recalls Kevin, a local Danvers, Mass. resident. 

Between recurring headaches, finger numbness, and energy so low his wife and children noticed, it was becoming clear to Kevin that something was off with his health. So, when he learned during a routine physical that his blood counts were elevated, he wasn’t too surprised. 

However, it seemed to Kevin like his doctor wasn’t very concerned; he just told Kevin to see how he felt in the coming months. Given that Kevin’s mother was previously diagnosed with a myeloproliferative neoplasm (MPN), a group of related blood cancers, and the fact that he was experiencing similar symptoms, Kevin knew this could mean something serious and quickly took matters into his own hands. 

It didn’t take long for Kevin, who works in cybersecurity, to realize his doctor didn’t actually have all of his previous records. Because he and his family had moved, Kevin was seeing a new set of doctors and changed practices. It seemed it was up to him to connect the dots. After culling through years of bloodwork results, the steady rise in his blood counts became overwhelmingly clear. 

“When I was able to show that to my doctor, that’s what really led to me being seen by a hematologist,” Kevin shared.

His first hematologist diagnosed Kevin with primary myelofibrosis, a rare bone marrow disorder that is characterized by abnormalities in blood cell production, and suggested he wait and see how the disease progressed. But that still didn’t feel right for him. With three young daughters and a wife of 11 years at home, Kevin says, “watching and waiting wasn’t satisfactory.”

After more extensive research, Kevin found an MPN specialist to better help him manage his disease. Shortly thereafter, they discovered that Kevin was actually living with polycythemia vera (PV), not primary myelofibrosis. PV is a rare, chronic and life-threatening blood cancer that causes the body to produce too many blood cells, which can thicken the blood and may increase the risk of blood clots and cardiovascular conditions.

Although relieved to have a confirmed diagnosis, Kevin was scared and felt alone.

“I was worried about being there for my family, and being able to support them as my daughters grew. I was down,” he says. 

“I was worried about being there for my family, and being able to support them as my daughters grew.”

— Kevin

After his wife reminded Kevin that it was important to take some time to process his new diagnosis and that it was okay to feel scared, Kevin felt better. After he had a chance to process the devastating news, he turned to researching everything he could about PV and potential treatment options. He spent time on countless websites —  the National Institute of Health, Mayo Clinic, clinicaltrials.gov — and read and listened to excerpts and presentations from major medical conferences.

This led Kevin to begin looking into the safety and efficacy of BESREMi® (ropeginterferon alfa-2b-njft), the only FDA-approved treatment for PV that targets the source of the disease. Kevin watched videos on BESREMi’s mechanism of action and learned that it addresses the cause of PV by targeting the bone marrow to help control blood cell counts. 

Once again, Kevin was poised to bring a solution to his healthcare team. This time, his doctor was supportive. She agreed BESREMi was the right option for Kevin because it has the potential to do more than just address the symptoms of PV. He breathed a sigh of relief; he had finally found a doctor who was aligned with his more proactive approach. 

After his doctor wrote the prescription, a specialty pharmacy worked with Kevin’s insurance for approvals and the patient-assistance program PharmaEssentia SOURCE to ensure BESREMi was affordable for him. At first, Kevin was worried about administering BESREMi to himself, but after some practice with a saline needle in his doctor’s office, Kevin says it’s very routine for him now and only takes a few minutes. 

Best of all, BESREMi has helped Kevin’s blood counts go back to normal. He did experience some flu-like symptoms when he first began BESREMi, a common side effect for users in addition to an itchy and sore throat, but says he hardly experiences any side effects anymore. Kevin feels like PV no longer defines him; he has a chronic disease he needs to manage, yes, but his family, his hobbies and his work are how he describes himself once again, not as a cancer or PV patient.

When asked his biggest piece of advice for anyone fighting a chronic disease, or cancer, Kevin emphasized the importance of advocating for your needs. Do the research, ask the questions and be proactive. Kevin says he can’t imagine how things would have unfolded if he didn’t insist as opposed to just watching and waiting. 

“You are the author of your story. You hold the pen. Never forget that.”