How a Second Opinion Saved a Myeloma Patient’s Life

How a Second Opinion Saved a Myeloma Patient’s Life from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Judith shares her personal journey of empowerment in this Patient Empowerment Network program.

Watch as she explains how seeking a second opinion after her diagnosis changed the path of her treatment and life with multiple myeloma.

Judith’s advice: “Don’t be afraid to get a second opinion or even a third opinion. Getting a second opinion saved my life.”

See More From the Diverse Partners in Your Myeloma Care Program

Related Resources:

How Can I Get the Best Myeloma Care No Matter Where I Live

A Multiple Myeloma Advocate’s Uphill Battle to Care

Why Myeloma Patients Should Speak Up: Advice From a Nurse Practitioner

 

How Can a Myeloma Patient Advocate/Financial Advisor Help?

How Can a Myeloma Patient Advocate/Financial Advisor Help? from Patient Empowerment Network on Vimeo.

Diahanna Vallentine has not only experienced life as a multiple myeloma caregiver and patient advocate but also as a financial advisor to patients. Watch as she shares things she’s learned talking with African American patients—and how she helps those in underserved communities with affordable access to myeloma treatment.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

Diahanna, we know many of the roadblocks to treatment boil down to access and the web of financial toxicity. In the work you do, how are you helping patients make informed decisions, and can you please provide some examples?

Diahanna Vallentine

I think one of the main variables that causes the disparity overall before even treatment is needed is a mistrust in the African American community as a result of past historical treatments, experiments that were done on the African Americans. And I find that talking to anyone. 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.

Some of the things that I am doing is I try to be available to talk to anybody, no matter what time of day it is, talk to them where they’re wanting—where their needs are, listening to them and not making preconceived notions about who they are, where they come from, what their experiences are. And it’s an ongoing educational program for me, because we all come in—as difficult as we are, come in with preconceived notions of what our knowledge is, what our experience is, and how we’ve treated other people. And that has been one of the things that I have been practicing every day when I talk to patients, whether it’s in-person or on the phone. I have a unique perspective having been a financial advisor for more than 20 years, being a caregiver to a myeloma patient, being a patient advocate and not having the fear. I guess that’s something I grew up with. Not having the fear to talk to people or ask people questions, and let them know from the on-go that we all have something in common.

And once you establish that area of trust, then everything else comes easy. When you realize that that could be me in that bed, that could be my mother, my father in that bed, then we all become as one, per se. And so some of the things that I do is I talk to a person at the level they want to be spoken to. I ask them how they want me to communicate with them, how often they want me to communicate with them, is there anyone else they want to be involved in it. And then I take that information that they’re trying to gather and find resources for them so that financial toxicity will not become an issue, so that we can discuss with their caregivers what the treatment plan is, what the anticipated cost is, so that we can work around some of those financial barriers that they may come up against. And whether that’s looking at their current insurance plans, insurance plans they may have access to in the future, whether it’s through a spouse or their employers, or Medicare, Medicaid. We try to anticipate what those things are so that the financial toxicity does not become a burden, which again, affects their care, because stress affects your care and your outcomes.

A Multiple Myeloma Advocate’s Uphill Battle to Care

A Multiple Myeloma Advocate’s Uphill Battle to Care from Patient Empowerment Network on Vimeo.

Diahanna Vallentine of Louisville, Kentucky shares how advocating for her late husband of 28 years following his myeloma diagnosis “felt like an uphill battle.” As any care partner in this position, Diahanna’s multiple myeloma research uncovered more questions than answers. When she sought clarity from her husband’s care team, she was met with hostility. The toll of emotional and financial toxicity ate into their life savings. Following her husband’s passing, Diahanna has made it her life’s mission to help other patients and families facing a multiple myeloma diagnosis avoid inequitable roadblocks to care.

Diahanna’s advice,“Find your voice, talk to your doctor and feel empowered to question your care team. These actions are key to staying on your path to empowerment.”

See More From the Diverse Partners in Your Myeloma Care Program

Related Video:

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live


Transcript:

My name is Diahanna, I’m from Louisville, Kentucky. My husband of 28 years was diagnosed with Multiple Myeloma in 2005 after a prior misdiagnosis and treatment. My family and I were devastated.  Prior to his diagnosis, we were busy with two sons in high school, he was working and coaching and I was starting up my own investment firm. Following the myeloma diagnosis, I became my husband’s advocate and caregiver. As his myeloma progressed, our path to empowerment didn’t come without trials and tribulations.

In the hospitals, I found other families overwhelmed by emotional and financial toxicities. Advocating for my husband felt like an uphill battle. While he was on life support, his doctors wanted to do an experimental treatment and I asked “What was the experiment? 

And what were the outcomes of the experiment?” The doctor got six inches from my face and said, “You don’t have the right to ask questions, we’ll normally do this and you’ll find out about it later.” 

This was very disparaging. The hospital had signs indicating the importance of family involvement in treatment for better health outcomes. What was it about my situation that did not allow me to have the same opportunity? 

I soon realized it had nothing to do with my education, or economic background, it was a matter of stereotypes and unconscious bias. And as a result, many suggested treatments were not in my husband’s best interest, or our family’s financial best interest. We soon found ourselves using our life savings. 

Since the passing of my husband, I’ve made it my mission to help others facing the same challenges we did. 

I want to let patients, caregivers and families facing a multiple myeloma diagnosis know there is hope. Don’t give up.  There are resources available to you. Find your voice, talk to your doctors. Be strong.  Feel empowered to question your care team, and find out what the cost of care is going to be from the outset.

 These actions are key to staying on your path to empowerment.

Everyone should be able to get the best myeloma care no matter where they live.