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Navigating Lupus: Silicon Valley’s Guide Since 1978

In This Episode:

In the vast realm of health challenges, one stands out with its distinct female majority: lupus, a condition where a staggering 90% of those affected are women. Yet, beyond the gender disparity lies a financial storm, with each patient shouldering an annual loss of $50,000 due to healthcare expenses and diminished productivity. But perhaps the most disturbing revelation? Over half of Americans remain in the shadows, either completely unaware or possessing only a vague understanding of lupus. It's time to bring this to light.

Lupus Dilemma of Silicon Valley:

  • Female Majority: Ninety percent (90%) of people living with lupus are women
  • Financial Struggles: $50,000 is lost annually by each lupus patient in healthcare costs and lost productivity
  • Lack of awareness: 63% of Americans surveyed have never heard of lupus or know little or nothing about this disease

“Our foundation's dedication to understanding and supporting those affected by this multifaceted autoimmune disease."

About Thomas Bakewell:

Thomas Bakewell is the Executive Director of the Lupus Foundation of Northern California, where he leverages his over 15 years of experience in the nonprofit sector to drive positive change and organizational success. Tom has a history of enhancing program offerings, increasing funding, and improving operational efficiencies in various nonprofits, significantly expanding their impact and reach. His previous roles include leadership and board positions at the Nonprofits Insurance Alliance, the Sovereign Order of St John, Cake4Kids, and the de Saisset Museum at Santa Clara University. Dedicated to professional growth and advocacy for vulnerable societal groups, Tom collaborates effectively with staff, volunteers, board members, and community partners at the Lupus Foundation. Outside of his professional life, he enjoys family time, gardening, and golf.

"From high-tech to heart-led mission: Turning personal lupus experiences into a drive to lead and uplift others."

Show Notes:

  • What is Lupus? 
    • Lupus is a complex autoimmune disease predominantly affecting women, especially women of color. It involves multiple symptoms and organ damage, including the heart, lungs, brain, and skin. 
  • What is Tom Bakewell’s motivation behind leading the Lupus Foundation? 
    • The executive director shares his connection to lupus with his mother and daughter affected by the disease, fueling his dedication to the organization's mission. 
  • What are some impactful patient stories at the Lupus Foundation?
    • Highlighting stories of individuals positively impacted by the organization's support and services, including a woman who found support after a lupus diagnosis and a mother in Minnesota seeking empathy for her daughter's condition.
  • How does the Lupus Foundation address the challenges faced by women? 
    • The organization focuses on women, especially women of color, through diverse representation on the board and women-centric support groups. 
  • What are the varied support programs offered by the Lupus Foundation?
    • Introduction to programs like the Lupus Buddy Program, health conferences, virtual doctor visits, and support groups aimed at providing comprehensive help to lupus patients. 
  • What is ‘The Lupus Buddy Program’? 
    • The Lupus Buddy Program connects newly diagnosed and experienced lupus patients for support and mentorship. 
  • What are the exciting developments in Lupus Treatment? 
    • Discuss new clinical treatments and technologies targeting lupus and efforts to bridge the gap between patients and pharmaceutical trials. 
  • What are the challenges with Insurance for Lupus Patients? 
    • Addressing the difficulties lupus patients face with insurance companies and the organization's role in facilitating continuous communication for better care.

“Our relentless focus on patients, not profits, in the journey towards a lupus cure."

Episode Transcription

Give us a brief history of your organization. Who do you serve, and how did it all begin?

Let's start with a quick summary of our celebration of our 45th year of continuous service as a non-profit. We were founded in 1978. Joe Dewurst was our founder. She served as the first executive director for 31 years. And Joe herself was a lupus patient. Sadly, she passed away about a year ago. But it took about six years for her to get her lupus diagnosis, which even today is not uncommon to take that long to get a diagnosis. When she received the diagnosis, her doctor told her this is a disease that primarily affects women and can be fatal, and she doesn't know a whole lot more about it. And she found that to be very unsatisfactory. So she went to the Stanford University School of Medicine bookstore and bought the Stein and Day Encyclopedia of Medicine, which we still have in our offices today. On page 283, there are about three paragraphs dedicated to lupus. And it says, essentially, it's a disease that affects women. It's an autoimmune disease. It's very complicated and challenging to diagnose, and hard to treat. And with that as context, she said, that's not enough information. So she created an organization back in 1978, the Bay Area Lupus Foundation, which was what we were initially called. That organization's mission was to empower lupus patients, their loved ones, and their healthcare teams with the most current information available and provide programs and services to support them, the lupus patients, and their loved ones. And that is still our mission today. 

Lupus disease is an incredibly complicated autoimmune disease. And quite frankly, if they find a cure for lupus, most autoimmune diseases will benefit from that cure. But it is a chronic multi-symptom disease that creates tissue and organ damage at varying levels, of course. But the organs and parts of the body that can be affected by this are the heart, lungs, brain, nervous system, immune system, bones, eyes, and skin. The only outward symptom of lupus is a butterfly-shaped rash on someone's face or white fingers and toes. It is a disease that affects women and women of color much more than men by a factor of 10. In the United States, the prevalence of lupus is between 40 to 150 cases per 100,000 people. So, it's a fairly common disease in the United States and Europe.

You know, there's always a what and a why. So I'll start with the what. I've just said that it is such a complex and pervasive disease you don't need much more to motivate someone. However, for me, that motivation came about a year ago. It's funny; I spent my entire career in high-tech, running IT organizations for some of Silicon Valley's top companies. About six years ago, I went to work for a nonprofit company in Santa Cruz, California. I was running their IT organization. About a year ago, my wife, who also runs a nonprofit, got an email from one of her volunteers on the board at the Lupus Foundation saying, hey, we're looking for a new ED.

We've got a couple of years in the pandemic without one. Do you know any recruiter who specializes in the nonprofit world? My wife said no, but my husband does. So she sent me the job description, and I read the job description and said, I don't want to. I don't want to pass this on to a recruiter. I want to talk to them. I like the job. Sure. And my wife was, why? Why do you want that job? It was clear to me that my mom had lupus and passed away. My oldest daughter has lupus. And it is widespread actually for lupus to skip a generation. Oh. And I've seen firsthand what it did to my mom and what it is currently doing to my daughter. And for me, there was no way I could not want this job. So, I convinced the board to hire somebody who needed executive director experience. I would work hard and do everything possible to make this organization successful. They believed it, and they currently still believe it. Let's keep it that way, but that is the what and the why. And when you put those two together, I don't think of any more powerful motivation than to get out of bed every morning to help serve this organization.

Sure, so there's a lot. We serve Northern California from the Sacramento area down through the Monterey counties. And so we have a vast area to cover. We are also virtual, so we get patients from around the United States. But a very different couple just jumped out to me, one of whom is the sister of one of our board members and grew up in a family of five. She's very healthy. She started to develop some health conditions in college. She then took a trip with her family to Europe and realized she was exhausted. And she just attributed it to. You know, jet lag. Sure. And she also started to notice that her fingers were turning white. And again, just, okay, you know, she's 20-something in Europe and having a good time and doesn't feel right. It kept getting worse and worse over time. She had trouble getting out of bed when she returned from the United States. She had difficulty moving. When she had her strength back, she went back to work. It's Not a very good position. They had an ERT, an emergency response team at her company. They measured her heart rate, which was over 200 beats per minute. They got her into a hospital where she had a stroke in the hospital, which is a common manifestation of lupus. Heart disease is another one. Her heart stopped several times, but it took a long time for her to get the diagnosis that this was lupus. And she was scared to death. And so she and her sister began doing a lot of research online because nobody could give her much information. So she was taking it upon herself. And they found the Lupus Foundation of Northern California Online and contacted us. We worked with her to provide her with information on treatment and medications and paired her up with a buddy program, which is one of our services. We do virtual doctor office visits where she can talk to a physician. We do health conferences where she was able to participate and learn more. But more importantly, we provided support. So we listened to her when she needed just a set of ears. And she's been an active participant in the organization for 25 years. And it's just that she's been one of our faces of Lupus for us, a wonderful, wonderful woman to have helping us. And what she does for us is very, very visible. And so it's a straightforward example. But when I think about other things that we do and other success stories, I was in my office; we were a tiny office in San Jose, and one of our other staff members answered the phone. She was on the phone for 45 minutes. She was talking to a lady in Minnesota who found us on the internet, and her 13-year-old daughter was diagnosed with lupus. We don't have services in Minnesota, but everything's virtual anyway; we provide her with all that. But she didn't want those services. She just wanted somebody to hear how painful it was for her to see her child go through this. For 45 minutes, our staff member talked to her, didn't say a lot, just listened. We got off the phone in tears. And that is why we exist. It's the patient-centric perspective that we bring to this. It's not a foundation for anything more significant than dealing with patients. And those types of examples are on opposite ends of the spectrum. We get everything in between, but those are the two that just jump out as being, you know, we help somebody from literally a hospital room to a mom whose daughter has just been diagnosed with lupus. Very interesting. 

I mentioned a minute ago that it's 10X and predominantly women of color. And so there are multiple ways to do this that we have adopted, one of which is in no particular order, but one of which is diversity at our board. So, many of our board are female and female of color. And that's important for us to understand that perspective. And we have many of our board members on our board; either they or family members have lupus. So we have firsthand knowledge of what they're going through. We build support groups to cater to women and their families. A men's support group because there's not excellent communication, to an adolescent support group for children watching their parents go through. But the majority, those are just two of our 18 support groups. The more significant percentage of them are all women-based and women-led.

So we have a variety of programs. We've got the First in the Nation Lupus Buddy Program, which pairs up an existing lupus patient with a newly diagnosed lupus patient. And that can either be as a buddy, a friend, or a mentor-mentee, depending upon the patient's needs. We have health conferences that we put on six to eight a year. Our focus is both in English and Spanish. Our focus is the health care. So we have doctors. One of the last ones we did was the Women's Pediatric or Women's Cardiatric Center Chair from Johns Hopkins put on, or excuse me, the Mayo Clinic, and lupus. We have pharmacist programs discussing drug interactions and how to communicate those to your physicians. We have virtual doctor office visits one Saturday a month, where patients can talk to a physician about what's going on in their lives. We have the 18 support groups that I mentioned earlier. So it's all programs, services, and a library of video and digitally printed material for lupus.

The Buddy Program is fantastic. So you do it a couple of different ways. You can do it all online, anonymously, or call our office. So registering online says, hey, I've just been diagnosed, or my child or my loved one has just been diagnosed, like to be able to talk to somebody that has this. And it can be all online. We don't say you have to meet. There's no personal information that's given out. It's whatever you're comfortable with. So, we provide the training for the mentor or buddy leader and make it available to anyone across the United States.

The new treatments are all clinically, the medicine, essentially. And what we're seeing is the shift from corticosteroids to more targeted medications for autoimmune disease. We're seeing that happen at multiple pharmaceutical companies striving to arrive at that one medication that will alleviate the symptoms and then get to the root of the problem and find that cure. No one is saying there will be a cure in the next five or ten years, but the new medications are coming out at an increased speed. About four or five are coming on the market in the next three to six months with a lot of promise. We are presenting a program through two board-certified pharmacists. Who will drive behavior at the patient level with their healthcare teams, and why that's so important is that they need to be able to say look, here are my symptoms; this is what the new treatments are targeting. I want to be a part of that. That's the that's the clinical side. Another entirely different component is that 80% of clinical trials fail because of a lack of participation. And so we're looking at partnering with firms that anomalize patient data. And the patients still own it but share that data with the appropriate targeted pharmaceutical to increase the efficacy of the test. So, if we get a more robust size of participants, the trials go faster. If the trials go faster, the medication gets to the market sooner. There's also the potential for patients to benefit financially from that because pharmaceuticals are looking for patients. They can't find them. So, we're working with a couple of startups to get them to bridge that gap. So, there is considerable value in sharing that data and massive importance in the awareness of what's coming out. And we're trying to put those two together for our patients.

Insurance and financial services are a significant component of our society, a needed component. The majority of them are for profit. And so they are on a fiscal or a calendar year basis. Diagnosis can take multiple years. And so keeping that cycle current is extraordinarily difficult. One of the biggest challenges we see is the reset saying, okay, you've spent your maximum on this; we can no longer provide this care. And that's a problem that we're seeing. So, we're working with insurance companies and healthcare providers with their patient groups to ensure continuous communication. Because once you have that dialogue and start it with an insurance company, they tend to keep that file open longer. And that's what we're trying to help them accomplish.

So, the Lupus Foundation is a great word. The foundation sounds like it's a vast organization. We have one full-time employee. She's been with us for 16 years. She's fantastic. We have a half-time consultant who does most of our technology. And then we've got me, who is a half-time executive director. And we've got 18 support groups through Northern California. Every one of those is a volunteer. We have two major fundraisers a year: an OutRun Lupus 5K walk and run that we've just held this past summer and a celebration dinner every year. Those are all managed; we manage those logistically, but all the volunteers are both in preparation and on the day of the event. We couldn't do it without them. We provide training for our volunteers. We provide them with an environment in which to work. I literally cannot function without them. Our board is also a powerful component of that. Our board is extraordinarily active, and we also need that. Yes, you always want a board to be governance-focused. We need governance, financial, and operational help in a nonprofit world. And so they do know when to pull each one of those levers. But the volunteers for us are just critical. One of the first things I did when I joined the organization gave me a list of the volunteers myself. Let me tell them why what they do is so important. I shared my story about my mom and my daughter, and it's that connection with them because most of our volunteers also have lupus, which is lovely for them to share. It's also tricky because you can never predict when there will be a flare-up. So we must be extraordinarily sensitive to that and over staff because sometimes they just can't help.

I just used the word foundation; the biggest myth is, wow, you're a foundation; you must have lots of money. No, no, we don't. We, as a percent of what we raise on an annual basis, that percentage is so small it goes to overhead. Everything goes to programs and services. Because it's primarily volunteer-run, it's mainly volunteer-run, and we're not here to make money. We're here for the patients. Everything that we do is through the lens of the patient. We are a patient-centric organization. And so, we're a foundation. And the other one is that people think you must be a research organization. We help with research. We do what we can to help, but are not a research organization. We are, as I said, focused solely on the patient. 

Stay close. What, that's a quick one. What do I mean by that? Well, stay close to your healthcare team. Almost every lupus patient has an interdisciplinary group of healthcare providers. They're all busy. They all have a lot of patients. Stay close to them. One of the ways you can do that is journaling. So, as you have a flare-up, as your mood changes, as your medication changes, as your symptoms change, Write that journal and share that journal with your healthcare providers. It's essential. Stay close to your loved ones. Listen to what they have to say about what you're going through. Stay close to your mental and physical health. Give yourself time to recover. Give yourself time to feel better and enjoy life when you can. One of our services is low-impact workouts online low-impact workouts. I see. For lupus patients who may not be able to raise their arms above their head, pay attention to that. Stay close to how you're feeling. Stay close to us. We offer a lot of services. So, if you had to do the takeaway, it would be to stay close. 

Connect with 'Akhila Health':

If you or someone you love is navigating the challenges of lupus, contact ‘Lupus Foundation’:

Donate: Lupus Foundation of Northern California

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"In the heart of every woman they serve lies a story of resilience.”

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