VPR Patient Outreach Program works with hundreds of amazing patient educators. They all have inspiring stories, messages of hope, and a desire to give back to their respective communities. They travel the country educating and motivate their peers to take control of their disease and live an empowered life.
John K., a Multiple Myeloma Journey Partner, epitomizes the educator who goes above and beyond to support, inform, and advocate for his peers in the multiple myeloma community. John, a retired dentist and dental educator, is a Clinical Professor Emeritus at the UMKC School of Dentistry. John was diagnosed with multiple myeloma in 2007 and has since received two autologous stem cell transplants.
John enjoys woodworking, working at the School of Dentistry, and traveling, but his passions don’t stop there. The Multiple Myeloma Journey Partners program is just one of many ways John gives back to the oncology community. Here’s a brief look at the huge impact he makes in his “spare time”:
John has addressed and provided pivotal information to members of both the state and federal House of Representatives about the oral parity payment bill and oral chemotherapy access bill.
On March 19th, 2014, Governor Jay Nixon of Missouri signed SB 668, the Cancer Treatment Fairness Act, into law, making Missouri the 29th state to pass oral anticancer treatment legislation. This law places a cap of $75 per prescription per month for oral anticancer medications under private insurance plans. John testified in Jefferson City, MO in front of the House Insurance Committee encouraging them to pass this bill. He was in attendance when the bill went into effect and Governor Nixon signed it.
On the national level, last fall, John, along with two members of the Greater Kansas City Multiple Myeloma Support Group, spoke with Missouri Congressman Emanuel Cleaver and encouraged him to co-sponsor the bill. Prior to this, John had spoken with Representative Cleaver’s staff aids on two other occasions in Washington, D.C. This bill will be re-introduced this spring.
The TODAY Show
John met Tom Brokaw on the TODAY Show plaza in September of 2014. John took his son, Wyeth, with him and briefly spoke with Tom on the plaza before the show started. Tom referenced talking to a multiple myeloma survivor during the show that day.
Development of Programs
Recently, John used his background in dentistry to develop a presentation about a jaw condition a few years ago for a faculty lunch and learn at the UMKC School of Dentistry. He has since used his “Why Multiple Myeloma patients need to know about Medication -Related Osteonecrosis of the Jaw (MRONJ)” presentation to speak with others about the condition. MRONJ is a condition in patients with cancer that may be a side effect of treatment.
John says it is so important to him to give back to his peers because, “The diagnosis and journey that multiple myeloma patients face is filled with overpowering new medical providers and information, which can certainly make one somewhat fearful. Being able to share ‘the story’ is reassuring and uplifting to new patients. This is the strength of the MMJP program.”
John adds, “It is crucial that these conversations begin as soon following the initial diagnosis appointment as possible. By providing knowledge, personal experience and support the patient is strengthened and given the insight that hope for the future is a reality.”
In addition to being a member of the Multiple Myeloma Journey Partner family, John also:
- Is a member of the International Myeloma Foundation (IMF) advocacy team.
- Is a member and co-coordinator of the Greater Kansas City IMF Multiple Myeloma Support Group.
- Has participated in the IMF Support Group Leaders Summit in Dallas.
- Reviewed the book Myeloma Survival Guide for the authors before it was published.
- Participates in the Cleveland Clinic’s 4th Angel Cancer Patient and Caregiver Mentoring Program.
- Serves on the KU Cancer Center (BMT) Patient Advisory Committee.
- Serves on the Board of Directors of the TBA Foundation, which was responsible for publishing The Myeloma Survival Guide.
And John’s advocacy is far from done; he is currently phone mentoring six multiple myeloma patients from across the nation. John has also written the Myeloma Survival School Guidebook based on The Myeloma Survival Guide, which is a program designed to develop a team of patient-to-patient mentors within cancer treatment centers and support groups.
Thank you, John, for all you do for the multiple myeloma community. You inspire us to give more of ourselves.