Part 3 – Quality of Care
There are some elements that you may or may not have much control over, the first of which is the availability of insurance. If you do not have insurance or have no access to care, the average life expectancy is less than one year. However, Medicare has a Compassionate Allowance Program where you can be approved in less than two weeks if you go to your local office and can show that you will not live without care. The Affordable Care Act may provide an option for the 15% who are not insured, and Medicare, Medicaid, and drug company assistance programs are also available.
I chose to get my SCT (stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy. At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications. I have found from my work on this site that centers like Mayo, Dr. Hari (Medical College of Wisconsin), UAMS, or Dr. Berenson’s (IMBCR) have very different approaches to treatment, but because they are expert in what they do, they have similar results. You would choose a brain surgeon over any other surgeon if you had a brain tumor, why would you not do the same for myeloma?
Myeloma specialists have access to drugs that other oncologists do not. Because they are the thought leaders, they are involved in clinical trials, and can obtain some drugs through other programs that lesser known oncologists do not have access to. Worse yet, oncologists who are not myeloma specialists may not even know that some of these drugs even exist. For example, some of the well connected specialists have access to drugs or treatments like CAR T, MILs, Venetoclax or Selinexor, which are not approved treatments. But these experts can get approval for initial therapy through clinical trials or other programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Daratumumab, Ixazomib, Krypolis and Pomalyst), and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like KRDD (Krypolis, Revlimid, Darzalex, & dexamethasone) for first line therapy which provides a response in 100 percent of patients. When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. Because you need a significant infrastructure to conduct clinical trials at your facility and they cost the facility $15,000 per patient, few local oncologists have access to clinical trials. Sometimes it is who you know!
Myeloma patients seldom die from myeloma, they die from the complications from myeloma. The number one complication is pneumonia, and others include infections, kidney failure, anemia, etc. This, therefore, brings me to the realization that supportive care for the treatment of the many complications of this disease may just be as important as the cancer treatment itself. Or a great Defense(supportive care) is as important as the Offense(cancer therapy). MD Anderson and Mayo Clinic emphasize supportive care in their programs, UAMS actually has a Director of Supportive Care in their myeloma program, and Dr. Elias Anaissie, the Director of the Myeloma Program at the University of Cincinnati Cancer Center, has an extensive background in supportive care. Dr. Anaissie has published a well written example of an exceptional supportive care model.
I also think the quality of care that you receive can be affected by the knowledge of the patient, and this can be obtained by doing your research on finding the best approaches to care by looking at the work of the best myeloma specialists on-line, and by going to great sites as listed in the Resource Section of www.myelomasurvival.com. In addition, joining a support group of the International Myeloma Foundation or the LLS (Leukemia, Lymphoma, and Myeloma Society) will provide more great information to improve your life expectancy. I have found that the average life expectancy of most of these support groups far out-performs the average. Knowledge is power!
With 30,000 new cases of multiple myeloma in the USA, we can estimate the total number of patients in just the USA at 165,000. If we can move the average life expectancy from 5.5 years to 11 years by having myeloma specialists guide your care, we could save 165,000 times 5.5, or 907,500 years of LIFE. Many times more if we include the entire world. You all can help by getting this message out to the myeloma patient community though Facebook and Twitter. Everyone knows someone who has myeloma or may have a friend or family member that can be helped by this information. With your help we can “SAVE LIFE”!