One Patient Hopes His Voice Will Raise Overall Myeloma Awareness

The International Myeloma Foundation continues to share this collection of patient and care partner stories from those who have completed the Legislative Advocacy Master Class (LAMC). The IMF hopes that these unique and compelling stories will help raise awareness about the disease, inspire action, and make an impact in changing healthcare laws and policies for the betterment of the myeloma community. 

(EDITOR’S NOTE: The Legislative Advocacy Master Class is a 12-week immersive advocacy training course, and a combined collaboration between the International Myeloma Foundation and Patients Rising—"a leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare challenges.” The stories in this blog series were taken from the now-completed second class, where participants submitted their stories as final projects to graduate from the course. The LAMC is an ongoing effort to train advocates for the IMF to tell their stories, write a letter to Congress, and make an impact in changing healthcare laws and policies. If you have questions or inquiries, or if you would like to sign up for future LAMC courses, please email Michael Riotto at [email protected] (mailto:[email protected]).) 

This week's blog was written by Gerry Auth  — an eight-year myeloma survivor.

My story began sometime around 2014 when my PCP asked me to see a hematologist following abnormal blood work results. After more tests, I was diagnosed with monoclonal gammopathy of undetermined significance (MGUS), a precursor to multiple myeloma. After a couple of years, the MGUS became worse and turned into smoldering multiple myeloma (SMM). The SMM required blood testing every three months to monitor the disease. In October 2018, I needed monthly treatments. I should also mention that I was currently going to a big-name hospital that had a cancer center and oncologists who were specialists in the field of multiple myeloma. A second opinion at another cancer center agreed with the diagnosis.

The standard of care at that time was Revlimid, Velcade, and dexamethasone (VRd), which I took for about five months to prepare me for an autologous stem cell transplant (ASCT). After the required hospital stay for the transplant and the 100-day at-home recovery period, I went on monthly maintenance of Revlimid. This kept the multiple myeloma under control. But after about a year, the disease plateaued and was not getting any better. A switch to Ninlaro (ixazomib) was no better. So, in late 2020, the doctor put me on monthly Darzalex (daratumumab) injections and Pomalyst (pomalidomide) capsules for 21 out of 28 days. Within two or three months, I reached what is described as sCR, or stringent complete response. In other words,  local hospital blood tests could not detect any myeloma cells. I have remained in sCR for almost five years on this treatment.

From the very beginning of this journey, I have been fortunate to never have had any of the typical symptoms of multiple myeloma: no bone fractures or lesions, no kidney problems, no anemia, and no high calcium in my blood. And, out of all the drugs I have taken, the ONLY side effect I have ever had was a small stroke after my first dose of Revlimid in late 2019. I fully recovered from that stroke very quickly.

I was also fortunate enough to have received grants to cover my prescription drugs throughout my journey, and with my straight Medicare and my AARP Medigap insurance, the financial impact has been minimal despite the costs of oral medications totaling $25,000 per month.

With telling my story, I hope to advocate for greater awareness and knowledge of multiple myeloma among primary care physicians. I want to encourage anyone diagnosed with multiple myeloma, to seek out and see a myeloma specialist, and to obtain a second opinion from another MM specialist. Don’t hesitate to explore and apply for grants to help pay for the expensive MM drugs. And please advocate for the Oral Drug Parity Law to be passed in Michigan (or at the federal level) to reduce the out-of-pocket costs for the oral prescription drugs used to treat mutiple myeloma.  

About the Advocacy Master Class

At Patients Rising, we believe that patients and caregivers hold the power to move the needle in healthcare and create a better tomorrow for all patients and caregivers by raising their voice! That is why we offer our Advocacy Master Class in collaboration with the International Myeloma Foundation (IMF). The master class is designed to train patients, caregivers, and citizens in the art of healthcare advocacy.     

This course is a truly comprehensive way to learn how participants can raise their voice and create a better tomorrow for all patients and caregivers.  The IMF, in collaboration with Patient Rising, is spearheading the Advocacy Master Class. For more information on the Advocacy Master Class, email Michael Riotto at [email protected] (mailto:[email protected]).

About Patients Rising   

Patient Rising’s mission is “empowering every patient in America to advocate for reforms placing them, alongside their doctors, in control of their healthcare choices” with a bold vision: “Healthcare is personal. By partnering with patients, we envision a future where every individual has healthcare options that align with their unique needs and circumstances.” To know more about the advocacy organization, visit PatientsRising.org (https://www.patientsrising.org/).