START HERE Myeloma Activity Guide

START HERE Myeloma Activity Guide START HERE Myeloma is an empowerment program bridging the expert and patient voice, enabling patients to feel comfortable asking precise questions of their healthcare team. The world is complicated – understanding your multiple myeloma diagnosis doesn’t have to be.

START HERE Myeloma is brought to you by Patient Empowerment Network. It is made possible through support from Janssen Oncology, Inc., Merck, and generous donations from people like you.

TABLE OF CONTENTS

Newly Diagnosed: What I Wish I Knew...

3 4 6 8

START HERE Resource Guide and Sample 90-Day Plan

Treatment AKA “The Alphabet Soup”

Accessibility & Affordability

10 11

Patient Advocacy Corner

Living Well

NEWLY DIAGNOSED: What I Wish I Knew...

with Lori Sackett

It took me some time to navigate and find the wonderful network of organizations like PEN which provided educational and emotional support for me and other myeloma patients. The critical need to be seen by a myeloma specialist at a large center. The gift of finding other MM patients and a coach to share information and support. Shared experience and connecting with others have been very helpful. Prognosis statistics are just that - statistics. While they guide treatment decisions, they do not definitively define my PFS or OS. A reminder, data is historical, not necessarily reflective of current drugs and treatment outcomes. Take hope from the abundance of myeloma trials and promising new treatments. Along with the physical and emotional pain, there have been and will continue to be some real gifts during this journey if you look for them.

Diagnosed in June 2019

Started KRD induction therapy in July 2019

Flow bone marrow biopsy analysis showed no myeloma cells in October 2019

START HERE Multiple Myeloma

Resource Guide

NEWLY DIAGNOSED CHECKLIST

Get information about choosing a myeloma specialist or treatment center Talk with family and friends about how you feel and how they can help you Find out what your insurance covers Learn about the most current tests and treatments for myeloma Talk openly with your doctor about your fears or concerns Find out if financial assistance is available

HOW IS MYELOMA DIAGNOSED?

Lab tests Urine tests Biopsy

Bone X-rays Cytogenetics Gene array analysis

PET scan MRI CAT scan

Flow cytometry FISH analysis Immunohistochemistry

GLOSSARY TERMS

CAR T-cell therapies: CAR stands for chimeric antigen receptor. It is a biologic immune therapy where doctors take a patient’s own T cells (lymphocytes in the blood) or use a donor’s T cells, modify them with a new receptor, and then reintroduce to the patient.

BCMA-targeted therapies: BCMA stands for B-cell maturation antigen. This type of therapy targets cancer cells to slow or stop growth. They attack a specific antigen that is heavily present in myeloma cells.

Bispecific antibodies (BisAbs): Can be called T-cell engagers or T-cell redirective therapy. These are antibodies that have two arms. One of the arms is drawn to a target antigen, such as BCMA or which is located on the myeloma cell. The other arm is drawn to CD3 found on the T cell.

Relapse: Reappearance of signs and symptoms of myeloma after a period of improvement. Includes patients whose first progression occurs in the absence of any therapy following successful initial therapy.

START HERE Expert Tip

Myeloma Educational & Support Resources The Multiple Myeloma Research Foundation International Myeloma Foundation Cancer Support Community Leukemia & Lymphoma Society Myeloma Patients Europe Triage Cancer ACCC

"I start off by asking my patients, is there someone you would like to call during the visit? It is always better to have a caregiver or an extra set of ears listening in."

Cancer Care Cancer Grace Family Reach

Sikander Ailawadhi, MD Myeloma Specialist Mayo Clinic

Developed by Diverse Health Hub

START HERE uses PEN’s robust resource library and trusted advocacy partners to create a 90-day plan generated from a pre-knowledge quiz. Get your results in real-time, which then informs a collation of resources directly to you via email. Scan the QR code to begin.

Treatment

How to Approach the “Alaphabet Soup” of Myeloma Treatment

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What Can I Expect During a Bone Marrow Biopsy?

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Best Practices for Finding a Myeloma Specialist

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Sujata Dutta Myeloma Patient PEN Board Member

Lisa Hatfield Myeloma Empowerment Lead

Accessibility & Affordability

Upcoming Changes to Medicaid, What You Need to Do

Congress enacted the Families First Coronavirus Response Act at the start of the pandemic in 2020, which included a temporary requirement that Medicaid programs keep people continuously enrolled, and in exchange states received enhanced federal funding. The continuous enrollment has grown significantly compared to pre-pandemic levels, and the national uninsured rate dropped. Then in December 2022, Congress signed into law the Consolidated Appropriation Act to end the continuous enrollment provision on March 31, 2023. When this date rolls around, millions of people could lose Medicaid. KFF estimates that between 5 and 14 million people will lose Medicaid coverage when states terminate the continuous enrollment provision this year. Unfortunately, some people who lose coverage will be ineligible and will become uninsured if they do not transition to other coverage. For those who have cancer or long-term continuous medical treatment and are on Medicaid as a result of the provision and you do not have secondary insurance, it is important that you seek advice and know your options to stay on Medicaid so that you do not have a gap in coverage. You may be able to participate in the ACA marketplace plans with premium assistance or employer-sponsored health benefits. Fortunately, Congress enhanced subsidies for the ACA marketplace, which were first included in the American Rescue Plan during the pandemic, making those plans more affordable. Therefore, more people can take advantage of ACA plans with less out-of-pocket premiums.

What were these expansions to ACA?

Benchmark premiums across the country are an average of 4% higher than last year. Fortunately, the vast number of enrollees in ACA plans are shielded from this increase.

The changes in the expanded and enhanced marketplace premium subsidies enacted under the American Rescue Act which took place in 2021 were expanded through the Inflation Reduction Act through 2025.

As a result of the expansions and enhancements, including an extended enrollment period, more people can find the marketplace coverage more appealing.

The family glitch which before made people ineligible for marketplace subsidies if they had an offer of “affordable” employer based coverage, including the coverage through a family member's employer has changed. In 2023. Now access to marketplace coverage is based on the worker’s premium contribution for family coverage. If that premium contribution is more than 9.12% of household income, then family members have the option of buying coverage through the marketplace. Additionally, if you fall behind on premium payments or even lapse coverage, you can still enroll in a 2023 policy offered by that insurer, and that policy binder premium cannot be applied to past due or lapsed premiums. Most importantly, if there is a life qualifying event, you can still sign up for marketplace coverage midyear.

There are more qualified health plans issued. Up 88% from 2022.

Reviewing your options are very important. If you have a low income or if you have a family qualifying event, especially if you are struggling with an expensive illness, you cannot afford to have a lapse in coverage and therefore a lapse in treatment. When reviewing your options, always make sure the plan you are getting provides the best possible coverage for your condition. Don’t just consider your doctor visits, but also your medications and whether your current medical providers are in-network. And look at the true cost of your out-of-pocket costs, not just the premium. Unlike before, people with low incomes will be able to sign up for Marketplace coverage year-round, not just during the open enrollment period. And the coverage will start on the first day of the month after they sign up. Because of the enhancements and changes to insurance plans coverage, don’t assume you are in the best plan for you. If you are automatically enrolled yearly, your benchmark coverage plan may have changed. Your cost may go up as well, and you may not be aware of the subsidized premiums you are eligible for. It is encouraged that you review your options yearly. There is more enrollment help and resources for enrollees than before. Go to HealthCare.gov. The Find Local Help link provides contact information and hours of operation for the nearest program.

Review your health insurance plan, private and federal plans yearly. Make the best decision for you and your family. Don’t let opportunities pass you by.

Diahanna Vallentine, BCPA

Patient Advocacy Corner Advocacy Tips

with Lori Sackett

Be organized. Write down questions or concerns before you meet with your team. Print out study information or data that might be pertinent. Take notes during the appointment. Bring someone with you to provide an additional pair of ears (but clearly define roles. Early on my husband wanted to dominate the appointment, and I had to remind him to save his questions to the end). Second and even third opinions can be very meaningful. Not every center approaches treatment in the same manner. Ask to confirm the dose and drug before you begin treatment in the clinical setting. I regrettably have had several situations of wrong dosage and drugs that were no longer part of my protocol. Be politely persistent. Getting lab results and answers can require diligence. Read about multiple myeloma. There is so much information that can help guide your path. Ask your provider for help if you are experiencing problems with insurance coverage.

Living Well

Meditation on Peace

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Meditation on Joy

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