Fighting For Health Equity: California Black Health Network

Charles T. Brown:
Picture this. A Black patient walks into an emergency room, writhing in pain from a genetic disease. They explain their symptoms, their medical history, but something gets lost in translation. Maybe it’s implicit bias. Maybe it’s a breakdown in communication. Either way, they leave without the care they came seeking. Or consider a patient waiting for a kidney transplant. Medical algorithms are supposed to help allocate organs fairly, but researchers have found that some of these formulas inadvertently create longer wait times for Black patients compared to white patients with similar conditions. Then there’s geography. A woman is diagnosed with cancer. The nearest treatment center, an hour away. She has no car, no childcare, two jobs. She has to choose, her life or her livelihood. This is American healthcare, and for Black Americans, it’s a matter of survival.

My name is Charles T. Brown, and this is Arrested Mobility. Today, I’m talking with Rhonda Smith, executive director of the California Black Health Network. This is an organization that is pushing the medical system to do better through legislation and other programs that enable Black Californians to advocate for themselves when they get sick or injured.

Rhonda Smith:
Hi, I’m Rhonda Smith, the executive director of the California Black Health Network. We are a statewide organization that works to advance health equity for all Black Californians, and that includes outreach, education, policy and advocacy work, as well as programmatic work, to close the gap in health disparities. And we do that by getting to and addressing the root causes of health inequities, so going further upstream to address systemic and structural issues that contribute to health inequities that translate into poor outcomes for our community.

I’ll start by saying I was an engineer in a former life until 2008 when I was diagnosed with breast cancer, and that set me on a new path. Coming out of my breast cancer diagnosis and treatment, it was the end of 2008 and the economy tanked, so there were no real opportunities for me to continue to do the type of consulting work that I was doing prior to my diagnosis, and the end result and doing a lot of soul-searching led me to do work in breast cancer and parlaying my personal and professional experience to reframe my consulting practice to focus on providing health and wellness education experiences for women diagnosed with breast cancer at various stages of their journey. And it was through that experience that I first became aware of health disparities. I was living in South Florida at the time and became really intrigued with health disparities and what was happening to Black and Brown women in the community in South Florida and wanted to do more of that work.

In some cases, there were transportation issues very similar to here in California, especially Los Angeles. Now, generally speaking, there aren’t very many cancer centers located in under-resourced communities. And so, if you’re talking about trying to travel from, say, Fort Lauderdale, which South Florida was where I was living at the time, to the cancer center in Miami, the Sylvester Cancer Center, transportation became a real challenge and a barrier. Also, childcare issues. Some women had to deal with how to care for and provide for their children if they had to go to treatment, and making a trade-off between going to treatment and taking care of their child or going to treatment and going to work. And the short version of the story is that is why I ended up in California.

Our office is actually located in Sacramento, the reason being that is where our legislative capital is and then the capital of the state. And so, we do a lot of advocacy and policy work, as well as programmatic work, to close the gap in health disparities. And so, if we talk about the case of cancer patients, so one of the major pieces of legislation that we were a co-sponsor of and was signed into law here in California is called the California Cancer Care Equity Act, and that is specifically for California’s Medi-Cal, which is our version of Medicaid. And so, we knew that there were poorer outcomes for cancer patients in the Medi-Cal system compared to cancer patients who have private insurance. And so, this particular piece of legislation is intended to close the gap in cancer outcomes for the Medi-Cal population here, which is mostly comprised of Black Californians and also Latinos here. About half of Black Californians are enrolled in Medi-Cal, so it’s a significant portion of the population here in California that are Medi-Cal recipients.

And so, because of that particular piece of legislation, now Medi-Cal patients, or those in the Medi-Cal system, who receive a more advanced or serious cancer diagnosis can now get access to the standard of care, also get access to treatment at a Cancer Center of Excellence here in California, get access to precision medicine, genomic testing, and also get enrolled in a clinical trial if all commercially available drugs are not effective or successful in the treatment protocol. So that is an example of how we are addressing things at the system level and improving access to care that we anticipate seeing five to seven years down the road will be a significant change, or lead to a significant change, in cancer outcomes for Medi-Cal patients versus those with private insurance.

Charles T. Brown:
So Rhonda, what other types of policies do you advocate for?

Rhonda Smith:
One piece of legislation that we’re a co-sponsor of now, again, focuses on issues at the system level and eradicating racism and racial bias within the healthcare system. And so, we are supporting a piece of legislation that addresses the racial bias that’s embedded into medical algorithms that drive patient decision-making that often lead to different outcomes because of the race-based adjustment that is made in the algorithm. And so, we’re all human beings, we all physically are the same, on the inside especially. Exteriorly, we may appear different. But we’re all, at the core of it, human beings. And so, there should never be a race-based adjustment made in terms of how patient care is administered, especially patients who present with the exact same situation or case or condition. And so, we’re working with Dr. Akilah Weber, who’s a state senator from San Diego, on that particular piece of legislation. Again, part of our work to address some of the root causes of health inequities within the healthcare system.

Charles T. Brown:
What are some other ways that health inequities have historically manifested for Black patients?

Rhonda Smith:
Sure. I can give you two things. So one, in terms of data, so there’s a metric or measurement called the eGFR calculation, and that is specifically related to kidney patients, and especially those that may be eligible or are on the transplant list. And so, because the race factor was incorporated into the GFR calculation, it caused Black patients to be delayed a year to a year and a half in terms of their eligibility and where they fall on the transplant list compared to their white counterparts. And again, that was purely based on the race adjustment.

And we know, unfortunately, still in some cases in medical school curriculums and how things are taught about different populations of people, there’s still the ideology that Black people can tolerate more pain than white people. And so, what that results in is related to cases where there may be a sickle cell patient who shows up at the ER with an acute situation and in severe pain, and the medical professional who may be treating them makes the assumption that they’re drug-seeking, or thinks that because they can tolerate more pain, I’ll just give them some Tylenol, when in fact, they really need more than that. That is another way that unconscious or conscious bias or whatever you want to call it seeps into caring for patients that may look different than the provider who’s delivering the care to them, or how they were maybe trained and conditioned to think about certain patients while they were in medical school.

And so, we applaud those medical school programs that actually incorporate health equity, not just as a course that a student can take, but as part of the curriculum, so that as they are being trained as clinicians and physicians, they begin to see things through a different lens, and more of a health equity lens, while they’re going through their medical school education, as opposed to not doing that, and when they get into a clinical setting, they see things differently for patients who may look like them and patients who may not.

So for example, there may be a patient who a doctor is seeing, let’s say, for example, they’re on blood pressure meds, and if the doctor asks the patient, “Well, why aren’t you taking your blood pressure meds?” And sometimes they may make assumptions that that patient is not compliant, when in fact, it may be that the patient can’t afford to pay for their prescription medication because their copay is too high for the insurance that they have, or they work three jobs and they just couldn’t get to the pharmacy in time. And so, that’s why it’s important for doctors to really understand what is happening in a patient’s life, because when someone shows up in an exam room, it’s just a consequence of what is happening outside of the four walls of any healthcare center or clinic. And so, when we talk about whole person care and understanding how to really treat the patient as opposed to the symptoms, that is something important that I think needs to be incorporated more into primary care and medicine in general.

Charles T. Brown:
What does success look like in terms of engaging Black Californians and improving their health equity and health outcomes?

Rhonda Smith:
We are fortunate enough to be a grantee partner with the California Healthcare Foundation, who, about three years ago, invested in a research project called Listening to Black Californians, and this research project was intended to understand what is happening with Black Californians when they interact with the healthcare system and what that experience is like for them. And so, what came out of that research was a set of recommendations, one of which identified the need to improve health literacy, and also our community’s ability to navigate the healthcare system and be able to advocate for themselves and their loved ones, and also to build a network across the state of health advocates. So we are the steward and the partner with the Healthcare Foundation to move forward that recommendation, which has evolved to what’s called the How Do I campaign, and that’s really intended to help our community understand, how do I do whatever it is I need to do in the healthcare system to make it work better for me and for me to get the care that I need and deserve?

And so, a simple example is a lot of people don’t know that they can get a second opinion or how to get a second opinion, so we help them understand how to do that. A lot of people don’t know that you can file a complaint against your healthcare provider, or even your healthcare plan, so how do I do that? How do you really be more proactive about managing your health and wellness and really build a partnership and a relationship with your healthcare provider, which you really should? So we’ve launched a education series to improve health literacy in that regard.

And so, our first part of the series, we did a five-point series last year entitled Making the Healthcare System Work Better For You, where we talked about understanding patient rights. A lot of people don’t know there is such a thing as a patient bill of rights. What do I have rights to? What does that really mean? How do I exercise my rights? How do I protect myself and my family? You have to know what your rights are as a patient. Second, we also help people understand how to communicate with their healthcare provider, no matter who or what type of provider they’re dealing with. We taught people how to navigate through the healthcare system, whether it’s their insurance or an ER visit, hospital stay, or even an office-based visit.

We also focused on helping people understand how to advocate for themselves and their loved ones, especially if they’re confronted with a serious health diagnosis or condition. And then, last, how do you participate in the decision-making for your care, and really be a partner in that process with your healthcare provider or team?But really, it’s all about patient-centered care and that individual, whoever they are, really being at the center of decision-making for their care and playing a key role in that, and owning that power and that dynamic as well. So this year, we are launching part two of that series, still entitled Making the Healthcare System Work Better For You, but this is taking it one step further to actually help people understand, okay, now you’ve learned the foundation, but how do you really apply this in your daily lives as you’re trying to get the care that you need or get access to basic healthcare services?

We started, about three years ago, a health equity advocacy training program, and we call it the HEAT Program for short, because we want people to go back to their respective communities and turn up the heat and cause some good trouble. And so, what the HEAT Program is all about is really helping individuals from our community understand things about how the California legislative process works and how a bill becomes a law. What is advocacy? How do you engage communities around a common issue or cause to drive change?

How do you communicate with legislators, so that if you have the opportunity to meet with them, how do you present your ideas and issues that you want to uplift and hold them accountable for that are impacting individuals in your community? And then, we also help them understand what is really happening here in California with regard to the health equity and healthcare landscape, and especially for this year’s program, we incorporated a lot of information about what is happening at the national level and how that could impact things here in California. And then, we also help them understand how to act and engage locally, to not only drive local change, but also on a statewide basis.

And so, we actually take the program participants, after they finish the training program, to Sacramento to meet with their state representatives, both on the assembly and the Senate side, and on both sides of the aisle as well, to really uplift and advocate for change around issues that they feel are really impacting the health and wellbeing and longevity of life for folks in their community. So I think a lot of people, unfortunately, don’t know or know how… They don’t know, first of all, that they have the right to go visit with their state representatives or their representatives in D.C., and then let alone how do you go about doing that? And then, what do you do when you’re in the room sitting across the table from these individuals? And then, what do you do after that meeting to keep the lines of communication open and that door open and build a relationship?

And so, I think it’s really all about empowering individuals to amplify their voice and be part of influencing policy and how they can go about doing that and engage in doing that. So we are building a network of health advocates across the state that we hope one day themselves might run for office. But in the short-term, taking this back to their communities and being actively engaged locally to really help advocate for change within their community, and using the tools and knowledge and knowhow that we impart on them through this program locally within their respective communities.

We know, we track how many people we’ve educated over the past few years. I mean, last year alone, with the Making the Healthcare System Work Better For You series, we educated over 650 people across the state, both through the webinar series and we also do in-community conversation sessions. So we want to make sure that we’re meeting people where they are, and go into places and spaces that people know and respect and frequent, so places where people, I say, work, play, shop, pray and slay. So we want to make sure that we’re, again, going out into the community and not just doing webinars, because not everyone can take a step away from their day and participate in a webinar. So we want to make sure that we’re casting our net a little further and wider across the state to make sure that as many people as possible are getting access to this information so that they can really be an empowered patient or healthcare consumer.

COVID and the summer of 2020 was a moment in time. We were dealing with the rise of the Black Lives Matter movement, the death of George Floyd, the impact of COVID on the Black community, and here in California, there was an abundance of wildfires that particular summer, so there was a lot happening impacting our community here. And I say that was a moment in time where I believe there would be opportunities that would emerge for an organization like the California Black Health Network and our peers who work in this space and deal with and support the Black community here in California.

I think what is happening now with especially the current environment and climate and the potential budget cuts to important and critical healthcare resources and other social services and support, I feel like it’s another moment in time, although very, very different than the COVID situation, ut I do believe that this is another moment in time where we will be able to leverage it for the benefit of our community. It’s a little more challenging to figure out what that looks like, because things change on a daily basis and it’s a moving target, but I do believe that there will be opportunities to continue to do this work and have a greater impact on our community. And so, I’m hopeful, despite all the other things that are happening and what we’re dealing with on a day-to-day basis, but all the more reason for people to, I think, definitely get more engaged.

And there’s very much an intricate connection between your voice, your health and your vote, and so if we want to see change happen, I think the best and most effective thing we can do is make sure that we all get out to vote in the midterm elections, because at least that will give us a chance to affect some change. And hopefully, by that time, there won’t be too much damage done that is irreversible. But we can affect change through the power of our vote and our voices. So I want to encourage people to do that, for sure, and believe that we can make a difference, individually, as well as working collectively to drive change.

Charles T. Brown:
If today’s conversation moved you, I encourage you to learn more about the California Black Health Network and the work they’re doing. Check your own state for similar organizations fighting for health equity. And remember, your voice, your health and your vote are all connected. I want to thank my guest, Rhonda Smith, for taking the time to speak with us for this podcast. If you don’t already follow Arrested Mobility on Apple Podcasts, Spotify, or wherever you get your podcasts, head over and tap the follow button. Find past episodes and more at arrestedmobility.com. This podcast is a production of Equitable Cities with support from Puddle Creative.