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As National Sickle Cell Awareness Month winds down, it’s key to take a deeper look at the ailment that afflicts approximately 100,000 Americans. Sickle cell disease (SCD) is a group of inherited red blood cell complications. By definition, according to the U.S. National Library of Medicine, “If you have SCD, there is a problem with your hemoglobin. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body.” The aftermath of this complication is debilitating pain.
Healthy red blood cells are round and circulate through blood vessels freely. Sickle cell carriers experience discomfort as their red blood cells are more crescent-shaped (similar to sickles). As a result, SCD red blood cells become rigid and attach to internal parts depriving others of required oxygen. Moreover, the lifespan of the specified blood cells is shorter, prompting mortality.
Also, when these moon-moldered cells hook into the body, they become less flexible and obstruct blood flow. With the compounding symptoms of pharmaceutical constraints in the United States’ healthcare system, Black and Latinx populaces make up the largest demographic of SCD patients. More specifically, per The White House, “This condition also disproportionately affects Black and Brown Americans, with an estimated 1 in 365 Black Americans… suffering from it.”
For Sickle Cell Awareness Month, which is September, REVOLT caught up with Lance Jasper Jones, the founder of Jasper House, a Los Angeles-based organization dedicated to medical resource allocation and mental health awareness. Read below as we observe Assembly Bill 1105 for SCD, patients navigating COVID-19, and why we “…need to get beyond acting like we are all perfect.”
Your recent Jasper House Warriors video stated, “We are seeing how important it is to have adequate medical service and medical rights.” With respect to service, please explain your involvement in Assembly Bill-1105.
AB-1105 was one of the first-ever medical bills for sickle cell disease in California. It was to provide $15 million for comprehensive care for adults. I had the privilege of being the leading voice of that bill for sickle cell patients. I talked about things we go through like discrimination in hospitals and fighting for our medical care.
How did this bill impact five comprehensive sickle cell disease facilities?
I believe it is an ongoing process. There are supposed to be five comprehensive clinics expanding from San Diego to San Francisco. As far as Martin Luther King, Jr. [Outpatient Center], they offer all types of sickle cell treatment care. My whole life, I have been going to cancer care clinics. Now, here we are, having comprehensive care clinics with doctors specializing in sickle cell disease.
Can you detail the time spent leading up to receiving a unanimous “yes” at the California State Capitol?
I gave a speech and performance at a sickle cell gala. Tony Gonzalez, [a] lobbyist in California, was moved and wanted to get involved. He was able to connect with researchers. We walked the [State] Capitol halls to meet representatives for two years straight. We were working on this bill with doctors and scientists.
Tony brought me in as the testimony of the bill. We answered questions of senators including the Congressional Black Caucus. We were telling them, “We are being subjected to discrimination. We are dealing with unbearable pain.” For example, I have had 10 surgeries myself. I was proposed to pass at 7. Here I stand at 33. [Following,] I started Jasper House Warriors.
You were born with sickle cell disease. Were there any testimonies from public figures you found inspiring during challenging moments?
There was no public figure with sickle cell. I learned about T-Boz later.
She does an annual sickle cell event in Los Angeles. I happened to be in a position to come out and speak to the audience one year. T-Boz was great.
Growing up, the figures who gave me motivation were people like Kobe Bryant. Of course, my mother [inspired me]. She had to literally become like a doctor to raise me. She quit her profession to make sure I had a dream.
You have emphasized your mother’s support and how that has helped you excel. Upon other sickle cell patients receiving an unfavorable prognosis in hospitals, do you believe they are adequately recognized?
Great question. [My perseverance] represents more of what we have done on our own. I think [surpassing a negative expectation] should be the opposite of making a medical professional look heroic. It should make them look ignorant. Excuse my language.
For instance, let’s say that we hear, “We’ve done all we can do for you.” It is like some jump to conclusions. We have had doctors come into rooms and say, “There is no more that we can learn about sickle cell.” You have to learn by trial and error.
The month of September is Sickle Cell Awareness Month. Your involvement is year-round with the Jasper House Warriors. How did your mental health and sickle cell disease organization come to be?
Growing up, it was difficult to find my place. I could not play sports, even though I was in love with basketball. [Physicians] put many limitations on you. I.e., You can’t go swimming. And they are not just saying this to me. They are saying this to anyone who has sickle cell. After I received my associate degree, I started volunteering [for SCD causes].
One thing that I began noticing was young adult struggles. I would hear how the sickle cell was holding them back. That led me to go to school to receive my clinical psychology degree and start Jasper House Warriors. We were not handling our mental health dealing with a life-threatening chronic disease. I try to live a life that shows them you can do whatever you put your mind to.
Why is the emphasis on mental health crucial alongside your Jasper House Warriors advocacy endeavors and ongoing campaigns?
Mental health is everything. It is how we treat people. It is how we feel about ourselves. If we could have better education and perspective on dealing with depression, anxiety, or our emotions, I think our society would be a little better.
For those unfamiliar, can you explain how sickle cell disease affects those with the illness?
We deal with red cell dysfunction. They can create debilitating pain episodes. They can last between seven days to 14 days. I have also had two hip replacements. Again, I am only 33.
I have had three compression fractures on my spine. And I am blessed to be standing and running. These are things we deal with. On the outside, you would never know a person with SCD has [these issues].
How can readers become involved to assist sickle cell disease survivors in their communities and beyond?
We can help our community by being there for them. Now we have all these digital forums and spaces. That allows us to communicate and learn from each other. I think that is the best avenue that we have. To get involved with our people and donate.
Recently, Jasper House Warriors had a comprehensive COVID-19 awareness discussion. What are some unique circumstances people living with sickle cell disease have to navigate during this pandemic?
SCD was one of the top five illnesses that COVID-19 affected the most. Sickle cell patients do not have the same capacity within their immune system to fight illnesses. A common cold for a person with sickle cell disease is not just a common cold. It is bigger than that.
It was important to get people to take the vaccine and COVID-19 seriously. [We needed] to answer any questions they might have concerns about. For example, will COVID-19 vaccines affect sickle cell medication or treatment? We tried to educate and protect our community at the height of the pandemic.
A current effort in your SCD advocacy portfolio has been to partner with medical services such as PicnicHealth. How does this help patients own their medical records and fight discrimination?
PicnicHealth offers a service that will collect your medical records and organize them. You have access to them online or on your phone. It was important for Jasper House to partner with them because often when we go into the hospitals, we are being told what our treatment should be.
The issue with asking for medication is that it comes back with discrimination by the doctors. It becomes, “Oh, you do not need this medication. You just want it for the drugs.” With PicnicHealth, that would not happen anymore. I can pull up [my medical records] on my phone and say, “The last three times I was here, this has been my treatment plan.” They cannot deny you.
A significant concern for sickle cell disease patients in the Los Angeles area is the mortality rate. Please elaborate.
In the ‘90s, the sickle cell mortality rate was [roughly] 20 years old. Now, with good therapy coming onto the market, we have a 45-year life shelf. Mostly, we are losing people in their 30s. So, to make it to 45, you were one of the lucky ones.
Further, women with sickle cell disease are dying during pregnancy. They are not being listened to based on their pain. Black men are just being treated like drug addicts. You have this young man coming in shaking, sweating, and crying. He is asking for pain medication.
And [healthcare workers] perceive him another way instead of looking at what is happening on his medical record. They are not receiving the right care at the right time. We have to change that.
Now is an unusual time for young people and politics. Governor Newsom recently persevered through a Republican Recall in California. Jasper House Warriors launched a ’This Warrior Voted’ Campaign. Why is mobilizing in our communities vital to you?
We have to participate! If we want services to look like us — if we want communities to continue representing our culture and not be subjected to gentrification — [we have to vote]. If we want adequate medical care, mental health care, proper housing, and schools, we must participate.
We get there are a lot of [thoughts] around whether voting works or not.
That can be debated. However, we can’t just throw up our hands and say, “Well, nothing changes” because that is what they want. They want us to give up.
In what ways can readers become involved with your causes immediately?
Sponsorships! We are gearing up to help kids who are most in need. In hospitals, we just want to provide some joy during those times. We also want to help the caregivers. We are open to educating communities.
What is your mission/next with Jasper House Warriors?
We are strictly trying to break down the stereotypes that plague our community from receiving adequate medical and mental healthcare.
What do you feel some of those plagues are?
The plagues include discrimination, racism, a lack of education and participation. We are going to continue to do strong campaigns. We will show people how to get involved. Yes, [the city is] building an Intuit dome for the L.A. Clippers and all these new spaces.
We also need to house our own medical facilities. We have many [neighborhoods] within L.A. Still, all the mental health calls go straight to Los Angeles County. So, this includes Inglewood, Compton, and Watts health calls all going to one source. We can have hubs. We want to advocate on behalf of that and get more services in our communities.
How do you wish to be remembered?
I want to be remembered as a person who did not give up. Hopefully, that shows people that if we stand together as a community, we can accomplish anything. We can live a better life. Everybody is dealing with something.
We need to get beyond acting like we are all perfect and judging people as if we are perfect. Try to connect. We can be there for each other. For people with sickle cell, I think there is a new day coming. It will be for the next generation, but we have to continue to fight those battles and not give up.
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