Voices Across America

My Patient Story

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John

State: Missouri
Congressional District: MO05

Diseases

Blood Disease

Issues and Challenges

John has encountered: Access to Expert Providers, Caregiving, Copay Accumulators, Copay Issues, Insurance, Insurance Coverage is Inadequate, Invisible Illness, Oral Parity, Out of Pocket Costs, Rare / Underserved Disease, Step Therapy, Surprise Billing, Transparency in Health Care, Underserved Community, Uninsured

My Story

This is to be presented at a hypothetical Insurance Review Board Meeting.

Good morning, my name is John Killip.
I am speaking as a patient and representing Multiple Myeloma patients from across our country. The focus of my remarks is the current proposal that you are reviewing related to the use of Step Care Sequencing of medications prescribed for Myeloma patients.

I was diagnosed with Multiple Myeloma in the fall of 2007. Myeloma is a blood cancer that occurs in the bone marrow affecting the plasma cells (the cells responsible for our immunities). Considered a rare disease it is the second most frequently occurring blood cancer. There are over 30,000 patients diagnosed each year In the United States. Currently there are approximately 180,000 people living with this disease (in the US). I have had two Autologous (cells from the patients body) Stem Cell Transplants and I am currently in medication supported complete remission!

Stepped Care Sequencing of treatments and medications is a way of life for Myeloma patients. The genetic makeup of the affected plasma cells is constantly evolving. Currently there are at least 13 genetic variations of the myeloma genes. As each treatment protocol winds down in effectiveness a new or stronger strain of the myeloma becomes prevalent. Our treatments have to be reevaluated and redirected to fight the emerging strain, therefore the reality of stepped care sequencing in our daily lives.

This is vastly different from the generally recognized steps in Step Care Sequencing (by insurance company guidelines) when a patient is expected to be begin treatment at a lower cost generic medication before moving up the steps to more effective and therefore more costly medications.

This was the exact focus of the conversation of an ICER Committee meeting I attended in May of 2016 when the Committee members presented the recommendation requiring myeloma patients be treated with sequenced medications as outlined in the ICER documents. The Committee had no knowledge or understanding of the evolving nature of the myeloma cells and that each new relapse is a new genetic strain of the disease.

At this time the data confirms that gold standard of myeloma treatment remains the Autologous Stemcell Transplant. Within recent years there have been multiple medications approved by the FDA for treatment of myeloma patients. Currently protocols include “cocktails” of multiple medications. As time evolves the numbers of patients treated exclusively with medications is rising. Most importantly these treatment cocktails must be sequenced appropriately to meet the needs the individual patient as determined by their doctor!.

Every patient’s sequence is slightly different. Every patients disease is slightly different. Therefore the name Multiple Myeloma.

I strongly urge each of you to reconsider your stance on requiring the traditional Step Cared Sequence for Multiple Myeloma patients.

Thank You. John, W. Killip DDS

My Motivation and Inspiration

Myeloma Patients I have encountered, those who are new to this journey (yesterday I had my second conversation with a man diagnosed two weeks ago, we discovered that we share several mutual life long friends), Those who are struggling with the disease and how to support themselves during this time, those I have shared the journey with who have become very close travelers and valued friends. I treasure of you and pledge to be with you every step of the way.

Patients Rising thanks for this GREAT learning and sharing opportunity. I look forward to continuing the interactions and the second semester when it is developed in the future. JWK

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