Becoming a Patient Advocate After a Multiple Myeloma Diagnosis

Jack with his grandchildren (from left to right) Ella, Grace, Athena, and Riley.

As a 22-year survivor of multiple myeloma, I’ve been involved with the different aspects of advocacy from the start. While going through my first treatment for multiple myeloma, I attended a Leukemia & Lymphoma Society support group, where attendees with multiple myeloma told me about a myeloma-specific support group that was invaluable.

What does it mean to be a patient advocate? The world of advocacy encompasses several areas, including (1) patient advocacy (that is, advocating for yourself and peer-to-peer); (2) fundraising; (3) legislative; and (4) research. Let’s review each option.

Patient Advocacy

The importance of being a patient advocate is easiest to appreciate as you begin to learn about your disease and treatment options. It’s the most valuable of all of these advocacy roles, because it affects you directly. There are many ways to learn about your specific cancer, and there is likely an advocacy organization associated with your disease that provides educational tools, such as videos, webinars, or manuals.

The International Myeloma Foundation and Multiple Myeloma Research Foundation are 2 examples of organizations for my type of cancer—multiple myeloma—where patients can become patient advocates. Pancreatic Cancer Action Network for pancreatic cancer, Leukemia & Lymphoma Society for all blood cancers, and Bonnie J. Addario Lung Cancer Foundation are a few organizations for other types of cancer where you can become a patient advocate.

Maybe you learn better by talking directly with someone. Consider support groups and peer-to-peer phone connections, such as the Leukemia & Lymphoma Society’s First Connection and Cleveland Clinic’s 4th Angel.

No one understands what it’s like to have your specific type of cancer as well as another patient. A patient advocate can initially provide you with questions to ask your doctors, as well as other suggestions, such as getting second opinions, and comparing inpatient versus outpatient treatment options.

Patient peer-to-peer communication is another area of patient advocacy. As you become more educated on your disease, consider being a patient advocate for other patients. You can start your advocacy in support groups, by phone, or via the Internet, such as through www.SmartPatients.com.

These are all excellent sharing vehicles as you remember what it was like when you were first diagnosed and share your experiences with others.

If you have time, try volunteering for one of these cancer organizations. You’ll learn even more about your disease, and your help will be sincerely appreciated by other patients.

Fundraising Advocacy

For many patients, fundraising advocacy may be the most difficult option. As patients, we all understand the importance of research and patient services for extending lives with good quality of life, but these things take money. And yet, none of us likes to ask others for money. I had to get through 2 hurdles in becoming a fundraising advocate—pick a particular cause or advocacy organization for fundraising, and realize that the money raised is not for me but rather for a cause that can and will affect future patients.

We are always asked to make donations, but do you know the number 1 criterion for making a donation? If you know the person asking, you’re more likely to donate. And as a corollary, do you know the number 1 reason that people don’t make a donation? Because they are not asked. When I make my fundraising appeals, I ask everyone I know, because I don’t know who may make a donation.

Many advocacy organizations have fundraising events, ranging from walking 5K to running a marathon, in which people are trained and in exchange are asked to fundraise. You can also create your own fundraiser, such as a golf tournament or a poker party, where the money raised goes toward a particular patient organization. These events are fun, and your success is very rewarding.

During the past 12 years I’ve raised $500,000 for various organizations, and I am quite proud of this. But it’s also surprising how many past donors have asked me to contact one of their friends who was recently diagnosed with multiple myeloma. Fundraising advocacy can lead right back to patient advocacy, and helping others get educated.

Legislative Advocacy

I’ll be honest with you—my least favorite type of advocacy is making appeals to our legislature, which moves too slow for my taste. Several times in conjunction with an advocacy organization I’ve been to Washington, DC, and Sacramento, CA, my state capital, to call on my federal and state legislative representatives. There are always important health affairs issues in the news that may affect patients.

In the past, these issues included Medicare coverage of oral cancer drugs, money budgeted for cancer research, and access to and cost of drugs. In my meetings, I typically share my multiple myeloma story, putting a personal face to the disease, and “ask” for legislative support.

Some cancer organizations play a large role in legislative advocacy and will also make it easy for you to e-mail your legislative representative about a specific issue, particularly before a vote. Some organizations fund trips for groups of patients to visit Capitol Hill, training attendees one day for scheduled legislative meetings the next.

Research Advocacy

Finally, in research advocacy a patient is asked to provide a perspective that represents other patients. Typically, patients filling such roles are asked to comment on early clinical trial proposals, and consider questions about the potential benefit of the trial for the patient (rather than research), or what eligibility criteria may affect patient participation. Sometimes patients will be asked to comment to the National Cancer Institute or the FDA as new approvals are being considered for a drug.

The most important example of a research advocate making a difference, at least in relation to multiple myeloma, was when long-time patient and research advocate Mike Katz, who passed away in 2015, convinced researchers to conduct a clinical trial to assess the steroid drug dexamethasone.

The standard of care for a dexamethasone dose was 40 mg a day for days 1 to 4 and then off on days 5 to 8, then repeating this 8-day cycle. But patients had terrible side effects with this dose of dexamethasone, so when the trial showed that a lower dose of dexamethasone—40 mg just 1 day per week—was just as effective as, and with fewer side effects than, the higher dose, the trial was stopped early, and the low-dose dexamethasone became the new standard of care. And patients cheered loudly.

One way to get more involved as a research advocate may be to ask your doctor. Perhaps you are near a cancer center that has committees that review trial proposals, or has an Institutional Review Board and a Data Safety Monitoring Board. Perhaps you know another patient who is a research advocate and is willing to mentor you.

Although being a research advocate required the most time from me—to learn more about my disease, the treatment mechanisms, clinical trial process, as well as overcoming a natural shyness asking questions of doctors who are developing trial concepts—I have enjoyed getting to know many multiple myeloma experts. I find them very kind, taking time off their busy schedules to answer my myeloma-related questions.

Playing a Part

Becoming an advocate in these different ways has also put me in contact with representatives from many pharmaceutical companies who want to become more patient-centric. I certainly understand much more about what goes on behind the scenes in drug development, from the lab to clinical trials design to the drug approval process, as more effective treatments are being developed for patients. I am fortunate to be able to play a small part in improving the lives of other patients with multiple myeloma.