Pod4Cure #7: A Voice for Myeloma Patients

In this episode of Pod4Cure, we discuss the ins and outs of patient advocates with Jack Aiello. As a myeloma patient, Jack has been a voice for patients in cancer advocacy organizations such as the International Myeloma Foundation, Multiple Myeloma Research Foundation, and more. Jack is also the facilitator for the San Francisco Bay Area Multiple Myeloma support group. Listen as Jack describes his myeloma journey, the four types of patient advocacy, and how advocates help to advance research for myeloma treatment development.

Sara Lippert (Left) & Jack Aiello (Right)

Transcript:

Sara: Hello, and welcome to Pod4Cure, the podcast brought to you by All4Cure discussing health care for patients with myeloma, their caregivers, and everyone in between. Today, I am joined by Jack Aiello, a patient advocate. Hi Jack, how are you doing today?

Jack: I'm doing well, Sara.

Sara: That's excellent. I'm looking forward to learning more about your role as a patient advocate, but before we get into all of that, would you mind telling me a little bit about yourself?

Jack: Sure. I'm 71 years old. I was born and raised here in the Silicon Valley area. I've lived outside of this area for only five or six years when I was doing graduate studies in Boston. I've always worked for various high-tech companies in the area of marketing. Personally, my next wedding anniversary will be my 50th. I have three grown children and four fabulous grandkids, two of whom are visiting now. So just in case you hear any strange high-pitched background noises, that's what it will be.

Sara: That's excellent. Congratulations on your anniversary! It's so exciting to have your family visit now that travel is a little less scary. So Jack, if you don't mind sharing, what has your myeloma journey looked like up to this point?

Jack: I was diagnosed with myeloma almost 27 years ago now, back in 1995. When getting treated, I wanted to find experts in myeloma. Honestly, there was limited expertise in the bay area where I live. I found a local myeloma support group, and that's when I first heard about Little Rock, Arkansas. Back then (and even now), Little Rock was a facility that was renowned for supporting myeloma patients. I traveled there and decided I wanted to have my initial treatment there. So in '96, my first major treatment was a tandem autologous transplant. That's when you have two auto transplants right in a row. Unfortunately for me, the remission only lasted a year and a half. I went through a clinical trial for Thalidomide and, while it didn't work for me at all, it worked for about a third of the myeloma patients.

Jack: That was the first really important clinical trial in myeloma that led to the development of many, many newer treatments for myeloma that we have today. But as I said, it didn't work for me. I went through chemotherapy options; nothing was working. I finally had a third transplant, except this one was a full allogeneic transplant. So in November of '98, after a very high dose of chemotherapy, I received my sister's stem cells. Ultimately that put my myeloma in great remission to the point where I haven't had any treatment since 2002. Interestingly enough, once my myeloma got into a great response, I had pretty significant side effects from one of the trials and from some radiation. I had to go on long-term medical disability. So that was my myeloma treatment story. My advocacy story started with that medical disability that I had to go on. I have bad, bad neuropathy. I have something called fibrosis from radiation, which is scarring. At this point, I can barely walk, even with the aid of a cane. When attending conferences and such, I will use an electric scooter to get around. Being in marketing, we were working trade shows. I have to get up and get around to everybody, and it just wasn't something that I could do as well as I know I should.

Sara: So you mentioned that this big change in your life is what led to your work as a patient advocate. What exactly is a patient advocate, and how did you find out that that was something you could do?

Jack: So I think of patient advocacy as having four roles or four types of patient advocacy. First of all, there is that focus on the patient, going to support groups, maybe facilitating a support group. There are advocacy organizations that help develop coaches and mentors for myeloma who are contacted and work with other patients. There is the Leukemia & Lymphoma Society who has a wonderful program called First Connection. You volunteer to speak with patients who request to find someone with not only the same diagnosis but maybe the same treatment they're about to encounter and want to hear from a patient about what their experience was. That's the patient advocacy part of advocacy for me. There is also public policy advocacy where you as a patient are sharing your story with representatives. Your representatives in DC or state governments create policies and budgets that affect cancer patients.

Jack: Much of the funding for clinical trials comes from our taxes. If we can at least focus on getting a public policy to expand that budget, then we can hopefully do more and better trials. The third part of advocacy is fundraising. There are a lot of advocacy organizations that depend on revenue, not only from companies but from individual patients. I make it a point to do fundraising nearly every year, and I think it's important and it's a way to help those organizations provide educational services for patients as well as clinical trial development. And finally, I think the area you're most interested in is research advocates. I started the first three types of advocacy probably five years after my diagnosis, but research advocacy came later for me, starting around 2005 probably. I've been doing it for 15, 16 years now. It's an area where you offer your patient perspectives to organizations that are developing clinical trials. They want to make sure that they hear from patients about what's important in those trials.

Sara: Super interesting! I had no idea that patient advocacy extended even into areas like support groups and fundraising. When I researched it initially, most of what came up was the research side of it. Looking into your history as well, I saw that working with the National Cancer Institute and the SWOG Research Institute were big areas of your contribution to patient advocacy. Focusing on the research side of it, you said that this really is for making clinical trials the best that they can be for patients. What is your role in aiding that? What are you advising on?

Jack: So you have to understand clinical trial design. Clinical trials typically have three phases. The first phase of a clinical trial is a small group of patients used to test a drug, but they're typically testing for safety and trying to figure out what the right dosage is. Those trials can be run by a pharma company that's developing the drug, or they can be run by a cancer center like mine at Stanford or UC San Francisco. As the trial gets larger, the phase two and phase three trials require more patients. A phase two trial is now looking at testing the efficacy of that new drug as well as side effects. That probably requires a hundred patients. In a phase three trial, they'll test that new drug against whatever the standard of care is for that patient. That will require several hundred or even over a thousand patients.

Jack: You need organizations that have access to a large number of patients to be developing those trials. There are different cooperative groups across the country. They go by initials like SWOG or ECOG or a name like Alliance. These are consortiums that each have hundreds of institutions. When SWOG, let's say, designs a trial, it's these hundreds of institutions that have a number of patients, each that can be part of that trial. They can accrue those thousand patients that are needed. The clinical trial itself typically starts off as a concept proposed by a principal investigator, a myeloma expert doctor. That concept is just a two-page write-up of what they're thinking of in terms of the importance of "Can we turn this into a trial?" They'll end up presenting maybe a 10-page document.

Jack: If that concept is approved internally by SWOG, they'll present that document to NCI, the National Cancer Institute, for either their approval or their recommendation for changes to ultimately approve it. If it's approved by NCI, it goes back to SWOG. A protocol gets developed, and that's where they dot all the I's and cross all the T's and end up with a 125-page document to answer every question possible about that trial for the physician to be able to execute that trial. That's where the informed consent that the patient who wants to enter will sign off on gets written from a research advocate standpoint. I'm fortunate enough to be able to add a patient perspective in all of those different areas of development from a concept standpoint. How important is that trial idea to the patient? What are the risks/rewards in terms of maybe getting into that trial from a protocol standpoint?

Jack: What about those eligibility criteria that need to be written both for eligible and ineligible patients? If you have HIV, for example, why should you be ineligible for cancer trials? You'll see that on some ineligible criteria. Those are questions I, as a patient advocate, can ask from an informed consent standpoint. How readable is that informed consent? You see a lot of legalese. Some of the language is required, but sometimes the English can be simplified and offered to the patients, so it is a little bit more readable. Maybe even a one or two-page summary can be written by a patient to help prospective patients understand that trial from an accrual standpoint. What about accruing a diverse population? It's well-known that for myeloma, for example, African-Americans have a 50% higher chance of getting myeloma than Caucasians. Is that reflected in the accrual, this diversity? We certainly want to have fair representation from a diverse audience. My job as a research advocate is to look across the development cycle of a trial and be able to offer a patient's perspective and ask questions so that, hopefully, the trial is successful and accrues successfully. The results are important to patients, and it's a win-win for everyone involved.

Sara: That is super fascinating. It's actually encouraging to hear that these huge institutes do rely on patients to make it more acceptable and really try to put the patient first. Even though sometimes that can get lost in all of the different phases of planning. Has your marketing background lent itself to this type of work? As somebody who works in marketing myself, I feel like your skills lend well to that.

Jack: Yeah, I think so. I think in marketing, you have to be a good listener, and then you have to ask good questions. It's interesting. I think the most important part for a research advocate is to make sure they stay educated in their disease and the various treatments available to treat their disease. But you also have to realize you'll never know the science as well as the principal investigator and all the other doctors you're dealing with in developing this trial. It really comes down to doing your homework and then asking good questions. I think, at least for me and some other advocates that have gone through this, it can be intimidating. You're not the scientist of the group, you're the patient, but you're dealing with scientists. And yet, all the doctors I've worked with have been very complimentary to me personally. They always want that patient perspective. I'm a good listener, so sometimes I'm silent because I don't have anything I think will add to what's being said. They will pick on me and ask me what my opinion of a certain subject matter is. I'll certainly offer it because they want that patient perspective.

Sara: Despite the intimidating challenges or being up against a huge board of scientists or researchers, what is the most rewarding aspect of this work for you?

Jack: I really appreciate the relationships that I've made with these various doctors. I consider many of them friends. These days, I will ask them if they'd like to speak to our support group at one of our meetings. I've always received 'yes' answers. I can personally email them anytime with a question, and I'll get a reply. I really enjoy working with the doctors. And, of course, it's rewarding to give back to patients. It's a pay-it-forward type thing. There were patients before me who were involved with this, and I appreciated what they did and benefited from their work. I'm told today by various patients that they think the same of me. There are a lot of benefits to doing it, and it keeps me busy, that's for sure.

Sara: It sounds like it! Even on top of that (you mentioned it a little bit earlier), you are the facilitator of the San Francisco Bay Area Multiple Myeloma support group. Does your work as a patient advocate ever bleed into your role as a facilitator? You mentioned that sometimes you could get doctors to come and speak, but how do those roles complement each other?

Jack: Well, if you remember, I started off by saying that the role of the research advocate is to provide patients' perspectives. Our support group meets monthly with 50 to 75 myeloma patients and caregivers who are all about offering their perspectives and asking questions. Maybe it's a doctor that I invite to help answer those questions, or those questions get integrated into a future clinical trial. How important is that trial to the patient, or, on the other hand, how much do patients hate getting bone marrow biopsies and would rather see their results tested by a blood draw rather than putting a needle in your hip? They fill me in all the time with the perspectives that are available from these patients, as well as others that I communicate with across the country.

Sara: That's awesome. The work that you do for myeloma patients is leaps and bounds. I'm really glad that you're able to get this perspective all around. Do you have any final advice for patients who are either considering becoming advocates or even just your general myeloma advice?

Jack: I said that there were four areas of advocacy, patient, public policy, fundraising, and research. Pick one or all four of those areas! If you're interested in that, you have to get educated about your disease, especially for the research advocacy role. Contact one of the many advocacy organizations out there that support your disease offer to volunteer. That's how I got started. There's the International Myeloma Foundation, the Multiple Myeloma Research Foundation, Patient Power, Myeloma Crowd, Leukemia & Lymphoma Society, Patient Empower Network, All4Cure, and more. They are all appreciative of anyone that might help volunteer and so way to learn a little bit more about what goes on behind the scenes. If you express an interest in being involved, let's say in fundraising, I know they can help you do that. If you expressed an interest to either become part of a support group or start a support group, if there isn't one in your area, they could help with that. Patients can check out Facebook groups and Twitter; you'd be amazed at how many of the myeloma expert physicians have Twitter accounts and offer their opinions on various treatment options or the importance of meetings that just took place and what came out of those meetings. You need to be proactive, but there are certainly opportunities for patients and caregivers to become more involved in advocacy.

Sara: I think that's really good advice. I am hoping that it gets to the people that need to hear it. Thanks so much, Jack, for sitting down and talking with me today. I feel like I learned an immense amount about not only what you do but just how clinical trials work to help patients.

Jack: I enjoyed talking with you, Sara. It was nice to share what advocates do. I've met so many folks that advocate across different disease forums and such. They're really, really bright people who are focused on doing better for other patients. It's a good group to be part of.

Sara: Certainly! Well, thank you so much, and I hope you have a really wonderful rest of your day. Thank you all for listening to this episode of Pod4Cure. If you or someone you know has multiple myeloma and would like to register with All4Cure, you can visit All4Cure.com.