MM Blog AA Archives

True Patient Empowerment: Bridging the Myeloma Patient and Expert Voice

March 16, 2023/in MM Access and Affordability, MM Blog AA, MM Blog ND, MM Blog TC, MM Newly Diagnosed, MM START HERE, MM Treatments and Clinical Trials, Multiple Myeloma, PEN Blog /by GIna Craig

Multiple myeloma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Myeloma program, which aims to bridge the myeloma patient and expert voice to build empowerment.

START HERE Myeloma Program Resources

The program series includes the following resources:

START HERE Patient-Expert Q&A Webinar with expert Dr. Sikander Ailawadhi moderated by a myeloma patient
START HERE Library with a robust library of digestible video content that merges the expert and patient voice
Your START HERE 90-Day Plan personalized 90-day plan with resources from trusted advocacy partners
START HERE Activity Guide a downloadable, printable support resource packed with information to educate, empower, and support myeloma patients and care partners in their journeys through care
START HERE Text Alerts to receive personalized support from PEN Empowerment Leads

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the PatientExpert Q&A webinar, renowned multiple myeloma expert Dr. Sikander Ailawadhi from the Mayo Clinic shares his expert knowledge to help patients and care partners fortify their knowledge and confidence, while myeloma patient and Empowerment Lead Lisa Hatfield moderates the discussion and shares some of her views as a patient. Dr. Ailawadhi and Lisa provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Diagnosis and treatment topics covered for newly diagnosed patients
Overview of novel myeloma therapies and research updates
Mutational markers in myeloma and clinical predictors of relapse
Access to multiple myeloma clinical trials
Recommended bone-building therapies for patients
Fluctuations in light chain numbers
The outlook for frequency of biopsies
Treatment response with myeloma therapies
Treatment options for myeloma patients who relapse after CAR-T therapy
Frequency and treatment considerations with amyloidosis
Incidence of kidney dysfunction and healthcare disparities
Outlook for the future of multiple myeloma care

Among some key points, Lisa shared her perspective about seeing a myeloma specialist, “There is great importance in seeking out the expertise of a myeloma specialist, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.”

Dr. Ailawadhi provided his expert perspective about recent developments in multiple myeloma research and treatments. “Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell.”

Dr. Ailawadhi also shared his excitement about the future of myeloma care. “So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.”

Dr. Ailawadhi has also been very involved in researching and working to improve healthcare disparities, and he shared some of this knowledge during the webinar. “Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. I’m interested in these healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment.”

Some program participants provided valuable testimonials about the START HERE Myeloma Patient-Expert Q&A webinar.

“I have been a myeloma patient for 8 years. This was one of the best webinars I have listened to. The speaker was excellent and the questions presented were great! Thank you for a wonderful session!”
“This program was well thought out and I felt like Lisa was reading my mind! Super job. It makes living with a serious condition a little less scary when you see so many people have the same questions as you.”
“Thanks for a great discussion. It felt like it wasn’t a lecture, but a conversation. Lisa is an inspiration to our support group members in South Carolina. We will be sharing this when we meet next week.”

We hope you can use these valuable multiple myeloma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

March 31, 2021/in MM Access and Affordability, MM Blog AA, MM Blog ND, MM Newly Diagnosed, MM Programs, MM TelemEDucation, MM TelemEDucation Toolbox, Multiple Myeloma /by Kara Rayburn

The Patient Empowerment Network (PEN) is fostering change toward achieving equitable healthcare for all. One resource, the Myeloma TelemEDucation Empowerment Resource Center is to significantly improve multiple myeloma patients’ and caregivers’ familiarity with remote access to healthcare, and thus increase quality of care regardless of geographical location. This one-of-a-kind resource center is intended to educate the myeloma community on the practical usage of telemedicine tools, to humanize patient and provider experiences.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to myeloma patients and to aid in receiving optimal care no matter virus limitations, where patients live, and other factors.

Benefits and Limitations of Telemedicine Visits

There are both benefits and limitations of telemedicine visits. Some benefits of telehealth include:

Telemedicine allows care providers the opportunity to determine when myeloma patients really need to be seen in-person.
Standard of care and maintenance treatment are usually a good fit for using some telemedicine visits in clinical trials.
The option to get laboratory work done closer to home is a benefit for saving travel time and from taking time off of work and also lessens patient exposure to viruses.
Telehealth allows care providers the opportunity to meet family members of some patients who can’t make it to in-person visits and to get to know their patients on a more personal level.
Care providers are now able to provide second opinions to patients in other parts of their state and even to some patients across the country.

Unfortunately, some limitations of telehealth include:

Gauging toxicity and other things with new treatments are usually best done along with performing a physical exam.
Some patients only have technology access to talk over the phone and don’t have access to use video due to their device or due to lack of Wi-Fi bandwidth.
Physical examinations cannot be performed via telehealth visits.
Some providers feel it’s more difficult to establish a bond with some patients and to have considerable discussions with then over telemedicine.
Open and honest communication between patients and care providers is sometimes better served in-person.

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits are:

Try to write down your questions for your doctor or care provider before your appointment to keep on track. Keep it next to you for easy access during your visit.
If patients normally have a friend or loved one join or doctors have a nurse or pharmacist join for in-person visits, have them join your telemedicine visits to help take notes, to ask questions, and/or to provide answers or additional information.
If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time to prevent rushing before your appointment. If possible, try to test the video conferencing tool with a friend or loved one a day or so ahead of your appointment.
If there’s anything you don’t understand during the appointment, ask your doctor to explain it again – whether it’s medication instructions, test results, a new medical term, or anything else.
If you feel like a treatment isn’t working well for you, ask your doctor about possible medication or dosage changes.
Just like in-person doctor visits, your doctor or care provider may run a few minutes late. Try your best to remain flexible and to be patient.

Telemedicine and Multiple Myeloma Clinical Trials

To the surprise of some, telemedicine has taken a role in multiple myeloma clinical trials. Currently, and looking to the future, patients can expect:

Telemedicine to continue as an option for follow-up visits along with in-person visits in clinical trials.
Paperwork for clinical trials to be available to complete online for an easier process for joining clinical trials.
Multiple myeloma clinical trials to provide optimal care through the use of both telemedicine and in-person visits.
Telemedicine to provide more options for clinical trial access for those who live in remote areas.
Multiple myeloma clinical trials for quality-of-life studies, engagement studies, educational studies, and possibly others to be available via telemedicine.

Financial Benefits of Telemedicine

Telemedicine has brought some financial benefits for multiple myeloma patients, including:

Telemedicine saves the time and costs of traveling to appointments and can reduce or sometimes eliminate the need to take time off from work for an appointment.
The option of connecting with your doctor via telemedicine can sometimes eliminate the need for costly urgent care visits.
The use of telemedicine eliminates the need to find child care for patients and care partners with young children who couldn’t take them along to in-person doctor appointments.

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools continue to increase in use and to be refined, multiple myeloma patients can feel hopeful about improved care and treatment ahead for patients. As a step in that direction, take advantage of the resources below and continue to visit the Myeloma TelemEDucation Empowerment Resource Center for informative content about multiple myeloma and telemedicine.

Resources for Telemedicine and Multiple Myeloma

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials?

Is Telemedicine Here to Stay for Multiple Myeloma Care?

What Are the Benefits of Telemedicine for Myeloma Patients?

How to Make the Most of a Virtual Visit

Telemedicine & Second Opinion Options

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

Financial Resources for Patients and Families

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

Checking the Pulse on Multiple Myeloma Health Disparities

November 11, 2020/in Health Equity, MM Access and Affordability, MM Blog AA, MM Blog ND, MM Blog TC, MM Blog WN, MM Blog WPS, MM Newly Diagnosed, MM Treatments and Clinical Trials, MM Whats Next, MM Whole Patient Support, Multiple Myeloma, PEN Blog /by Kara Rayburn

Even before the coronavirus pandemic arrived, health and patient support organizations made resolute efforts to examine and address health inequities for multiple myeloma patients in Black, Indigenous, and People of Color (BIPOC) communities. Diverse Health Hub and the Patient Empowerment Network partnered to help improve health outcomes for underserved myeloma patients through the Diverse Partners in Your Myeloma Care program. With a tumultuous year filled with the killing of George Floyd, social unrest, and coronavirus health disparities for BIPOC groups, these issues prompted us to focus on where things stand with multiple myeloma health disparities. We’ll take a look at what we know, what we’ve learned, and what help and resources are needed to continue advancing care for BIPOC myeloma patients.

Disparity Facts About BIPOC Myeloma Patients

Both Black Americans and Latina and Latino Americans show a myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, more frequently than others—.88 percent in Black Americans, .44 percent in Latina and Latino Americans, and .22 percent in white Americans.
Although multiple myeloma is diagnosed at a younger age in both Black Americans and Latina and Latino Americans, both groups are less likely to receive a transplant and start treatment later than patients of other races.
Black Americans are actually known to have less aggressive myeloma, which should show better health outcomes—yet that is not the case.

Learnings About BIPOC Myeloma Patients

Black and other BIPOC patients often have mistrust of doctors and researchers due to past experiments like the Tuskegee Study and Henrietta Lacks – whose now infamous immortal HeLa cells were taken without her consent. “If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare,” says patient navigator Diahanna Vallentine.

Barriers to care must be overcome according to Dr. Sikander Ailawadhi from the Mayo Clinic, “Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.”

Improvements are happening in care as explained by Dr. Ajay Nooka from Emory University School of Medicine, “What’s really interesting in this meeting is that there has been a lot of large database integrations, including one database called the National Cancer Database (NCBD) where people have looked at 20-year history of how these treatments have panned out. Which of the minority populations or which subset of patients gained the most benefit over the last 20 years? And we see minorities have gotten a lot of improvement and a lot of access to care over the last 20 years, but that’s not the end of the story, we have to catch up a lot more.”

The Path to Health Equity

Although the additional focus on health inequities has started to improve access to care, there is still a critical need to raise awareness about the treatment gaps for myeloma patients in BIPOC populations. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to better health outcomes?

Some valuable steps that patients, community leaders, and healthcare providers can take to improve care include:

Support organizations providing educational materials to patients that are target specific BIPOC groups
Patients and advocates making the BIPOC voice heard by asking for funds from community and political leaders to improve care
Healthcare providers developing relationships and partnerships with political leaders and support organizations to continue building momentum in improving patient care
Patients taking advantage of social workers and patient navigators at their clinics and support organizations
Patients, advocates, and healthcare providers working to increase clinical trial participation
Healthcare providers integrating cultural competency as a universal approach in the healthcare model

Resources like myeloma patient resource guides, informational graphics, and the Myeloma Coach section on the Myeloma Crowd website provide valuable information for patients. And though trust of clinical trials by BIPOC populations remains an issue, there are initiatives like Diversity in Clinical Trials Benefits Everyone. BIPOC patients can take action working together with medical researchers to increase clinical trial participation to improve and refine myeloma treatment developments for specific patient populations. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” program is a public health initiative designed to remove the barriers that prevent inclusive access.

Participating in clinical trials not only will improve myeloma treatments down the line but also provides a minimum of standard of care treatment at no cost to the patient. It’s a win-win for both the patient who participates in the study and also helps the progression of treatment for BIPOC patients diagnosed with myeloma in the future. Though progress has been made, patients, advocates, community leaders, and healthcare providers must take action to continue an upward movement to achieve equitable care that BIPOC myeloma patients deserve. Take advantage of the resources below and continue to visit our Multiple Myeloma Hub as we publish more on health equity developments for multiple myeloma.