Take time for yourself. In the early days, we ate, slept, breathed Sick Cells. As we grow as an organization, I am learning that I need to ensure a work life balance so that I’m my best self at work. That’s something we encourage our staff to do, too.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Ashley Valentine of Sick Cells.
Ashley Valentine, MRes is the Co-Founder and President at Sick Cells, a national advocacy nonprofit for sickle cell disease (SCD). Sick Cells’ mission is to elevate the voices of the SCD community and the community’s stories of resilience. Ashley co-founded Sick Cells with her brother, Marqus, in 2017 to educate, advocate, and raise awareness for SCD through local, state, and federal legislative advocacy.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path and point in your life?
What brought me into this career path is my brother, Marqus Valentine and our family. Marqus had sickle cell disease and started Sick Cells, the sickle cell advocacy organization that I proudly run, in 2008 as a documentary. This idea stemmed from his struggle with being a college student, the effort required to keep him as a full-time student, all balanced with a rocky transition from pediatric to adult care and him developing a seizure disorder.
When it was time for Marqus to transition from pediatric care to adult hospitals, there was a break in his care and treatment plan. This led him to develop seizures and left my parents to figure out what to do next on their own. This also happened in the early 2000s, prior to the age limit of insurance coverage to 26, so in order for Marqus to stay on my parents’ insurance, he needed to be deemed disabled and for my dad, be a full-time student.
The seizures eventually made Marqus lose his motor skills. He couldn’t hold a fork. He was shaky. He lost key memories like how to play violin. Holding a pencil was hard for him. He was unresponsive. Insurance wouldn’t cover rehab for him because sickle cell disease (SCD) wasn’t a condition associated with seizure disorders, so my mom studied rehab, and she ran her own version of rehab at home. We all did it together. Until he was able to walk again, my dad and Marqus’ friend would either carry non-responsive Marqus into class so he could get attendance points, or my dad would attend Marqus’ classes for Marqus, just to try and keep Marqus as a full-time student. In the end, Marqus took a medical withdrawal.
All of this was going on but what the public only saw was Marqus on good days. Until SCD starts to physically break down the body, it’s mostly an invisible disease. That coupled with the social consequences of being Black, people with SCD and their families move about carrying a heavy load with little support.
Marqus decided the best way to show the public about what goes on in our homes is through a documentary. He said people just don’t understand SCD. He wanted to open his life to the public so that folks can learn from him and also so that people with SCD are not alone. He asked me for help in 2015. We married Marqus’ passion for storytelling, film, and art with my professional work in government affairs and business development. Together we formed our nonprofit, Sick Cells, to ensure that we can reach more people living with SCD, ensure that their voices influence decision makers, and change policy to offer protections for people living with SCD while we are changing hearts and minds.
Can you share the most interesting story that happened to you since you began leading your company or organization?
The most interesting thing that happened to me and Marqus was when we ran our very first storytelling campaign. This was before we were even a nonprofit. We asked a couple of friends to volunteer with us, attended a support group at University of Illinois at Chicago (UIC), hired a photographer (which I paid for personally), and conducted a round of interviews. This type of storytelling had never been done before in SCD. What surprised me was that the people living with SCD and their families completely trusted us and opened all the way up to our volunteers. They answered our questions without pause. They allowed a photographer to take their pictures, document their visible SCD scars, and post their stories on our Facebook page.
I was so used to keeping SCD a secret for many years, that it brought me to tears that this group saw our vision and believed in the mission. Marqus and I went home and spent hours transcribing interviews. We didn’t have a budget to pay for transcription services, so it was me playing and pausing the audio and typing at the speed of light, with Marqus verifying what I wrote was accurate. Then we posted them on Facebook. That’s the next surprise. The posts were getting thousands of likes and hundreds of comments.
I stayed awake for probably a week monitoring comments, terrified that this thing was all going to go wrong. Marqus was grounded and confident that this was what we were supposed to be doing all along. He steadied me and that’s what launched the nonprofit. This community had not been offered a platform to share their stories. We were the first group to do that, and the response reinforced our mission to continue.
It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
I’m not sure it was a mistake, but it was definitely a learning curve turning a family organization into a professional one. We started as a family documentary project. That means that my mom was allowed to run our first Sick Cells Facebook account and I ran our first Instagram account. I love Momma, so please forgive me. She was using the official Sick Cells page as her open diary and a medical log of Marqus’ SCD journey. On Facebook, she was posting things like pictures of open leg ulcers, long entries about my dad snoring so she couldn’t sleep, pictures of our dogs, Marqus at appointments, and the lunch Marqus and Mom ate after a clinic day. On the Instagram side, all of our first passwords were “MarqusSmells” and while I posted pictures of Marqus, I still captioned photos with things like, “Thank goodness I showered today!”
When Marqus and I took it over for the nonprofit, our very first intern was our little cousin. Her job in 2017 was to go all the way back to 2009 and clean up Facebook and flag posts on our Instagram that needed to be revised. We also changed all passwords to something more professional since we now had to share them with a growing team. We still laugh about that because sometimes an old post will pop up and the current staff, who make our pages look beautiful, ask where it came from. It was me and my mom. That’s where it came from.
Social media is a powerful tool. We have connected with so many people living with SCD and their networks through it. We educate through our social media platforms, we empower, we disseminate information. That’s something that I didn’t realize we would need as a critical tool for advocacy when we got started.
Can you describe how you or your organization is making a significant social impact?
Sick Cells is a non-profit organization that seeks to elevate the voices of the sickle cell disease community and their stories of resilience. We work with fellow allies across the country to influence policy makers, educators, employers, healthcare administrators and healthcare providers to act to improve treatment and care for the sickle cell disease community. In highlighting the grave disparities this community faces, we hope to influence decision-makers and propel change.
Since my brother Marqus and I founded Sick Cells in 2017, we have achieved great milestones with the sickle cell disease community, including successfully leading the community in its first-ever Institute for Clinical and Economic Review (ICER) review, building coalitions to advocate for federal legislation to be signed into law, testifying at the FDA about the importance of drug development, building a network of over 200 Ambassadors and connecting them to research, speaking engagements, clinical trials, and each other, storytelling campaigns spotlighting underrepresented communities within the SCD space, and so much more to elevate the voices of the sickle cell disease community. Often times, Sick Cells is the first group to tap into the topic and then others follow. For example, our Caregiver Help Desk project launched a lot of work in the Caregiver space. More recently, we were the only org to have a dedicated Pride month storytelling effort and some of the first research coming out of the Hispanic community living with SCD.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
We have been privileged to meet many brave, strong and resilient faces over the years. One individual who comes to mind is Tristan. The story goes like this, a friend had an idea to have a fundraiser at a local bar. The bar happened to be a LGBTQ+ bar. While I’m an ally of the LGBTQ+ community, I felt a little conflicted about having a SCD event in a space that is made for a different underrepresented community. I talked with said friend and said the only way we make this event more meaningful is if we tailor it to highlight LGBTQ+ individuals who also have sickle cell. A couple of weeks before the fundraiser, we still didn’t have a good program other than hosting a happy hour. I was doing my typical review of comments on our storytelling campaign, and someone had commented on a photo about Marqus’ pediatric strokes. This person also had a stroke when he was young and described how acting, theater, and creativity rehabbed him. That story aligned with Marqus’ story. When I clicked on his profile, he described himself as “a fierce advocate for SCD” and was also from the gay community. The next series of events happened quickly. I shared his profile with Marqus. I then direct messaged Tristan. We did a three-way call with Marqus and me. Tristan was also a fashion designer. We invited him to have a runway show featuring his clothes and dressed drag queens and other volunteer models for the event. That was how Wiggin Out for Sickle Cell — our annual fundraiser — was born.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Racism, both interpersonal and structural, is the primary cause of health inequities, with profound impacts on the health and wellbeing of communities of color [1]. Understanding the environmental dynamics and process mechanisms that shape the creation and use of Health Technology Assessment (HTA) in the U.S. is a critical first step toward addressing its potential impacts on racial and health equity. The Finding Equity in Value whitepaper, which we recently published in partnership with the Innovation and Value Initiative (IVI), outlines three areas for improvement, which policy makers and community members must focus on in order to begin seeing change:
Engagement, inclusion, and voice of BIPOC communities in HTA. One major example I can give is about the decision makers. Like many other institutions, the entire HTA process is designed to exclude BIPOC individuals and communities. Starting at the very top, the ones who actually make the decisions about when to do an assessment, how to do the assessment, who is hired to build the economic models, which patients, providers, specialists are to be interviewed, and how their input will be used, all of that is decided by a majority of males and a majority of white people. That in itself sets up the entire review to be designed to box individuals like me and the SCD community out of the process. The gap between HTA teams and affected communities is widened by a significant knowledge gap — the expert community shares specialized knowledge about HTA and related sciences but often lacks knowledge of the lived experiences and priorities of other affected communities, and vice versa.
Exploration of evidence generation and methods to support equity-centered HTA. Since the murders of George Floyd and Breonna Taylor (and many others) in 2020, there has been this hot magnifying glass placed over existing systems and methods. I understand the goal is to try and identify flaws in our systems and structures so that we can fix them to promote a more just and equitable society. While the chatter around health equity has quieted a little, it’s a huge opportunity for groups like Sick Cells, who have had health equity on the mind — due to our disease state — to offer tangible solutions. The easiest solution I can offer is to hire a diverse staff. Also, it can’t just be one person — you must have multiple diverse people represented, and they have to be in leadership roles. The second major method to promote equity is to listen to under-represented populations. When you partner with these groups in ways that work for them, and you compensate them for their time, you’ll learn a lot. Listen, include who you listened to and use that insight to help inform the solution development process.
Recognition of HTA’s position within wider systems of racism. Further work is encouraged to identify the mechanisms that undermine equity in these three areas, better understand racial equity concerns in HTA, and identify and implement actionable steps to prevent the perpetuation of racism in healthcare decision making.
Are you working on any new or exciting projects now? How do you think this might help people?
We recently published a whitepaper — Finding Equity in Value — in partnership with the Innovation and Value Initiative (IVI) that provides recommendations on ways to improve value assessments for sickle cell disease. Value assessments, or healthcare technology assessments, can advise whether a new treatment should be used, and if so, which patients are most likely to benefit from it. Recommendations stemming from value assessments are used to inform the decisions of clinicians, patients, and payers and can impact the coverage and access for new treatments. Understanding the “value” of sickle cell treatments has become a priority across the sickle cell disease community.
Value assessments depend on mathematical models intended to predict outcomes in a simplified version of the real world. As a result, any biases in these methods will naturally carry forward into the value estimates produced by these assessments. Given the growing use of healthcare technology assessments to support coverage and reimbursement, this aspect alone has the potential to produce policy and delivery decisions that reinforce existing racial biases in health care.
We co-created the Finding Equity in Value whitepaper with the Innovation and Value Initiative (IVI) in pursuit of a shared goal to advance racial and health equity in and through the practice of health technology assessments in the U.S. The recommendations we provide in the whitepaper include:
Adopting more transparent and collaborative approaches that decentralize the decision-making power and that engage and empower patients to advocate for their voice and lived experiences
Increasing representation of patient and caregiver perspectives
Establishing and maintaining high-quality databases that adequately account for the diversity of SCD patients
Accounting for quantitative and qualitative data in the valuation process
Implementing methods that support equity
We hope the whitepaper will be used to inform improvements in the healthcare technology assessment process writ-large and, in particular, to help guide the forthcoming ICER gene therapy review and evidence report in sickle cell disease.
What you are doing is not easy. What inspires you to keep moving forward?
I’ve had the great honor of meeting countless SCD warriors, who inspire me to keep moving forward, even when the work gets challenging. Each SCD warrior has their own unique lived experience, yet they all share a common mission to propel positive change in the sickle cell community. My brother Marqus inspires me every single day and I remain equally as inspired by my family, who has joined forces with me to help advance Sick Cells’ mission. My mother Fran, a nurse and carrier of the sickle cell trait, serves as Sick Cells’ clinical adviser and my father Angelo, a union electrician by trade and a sickle cell trait carrier, serves as Sick Cells’ comic relief when things get heavy. My brother Kevin also witnessed how SCD caused emotional, financial, and physical pain on the family.
What are your “5 things I wish someone told me when I first started” and why? Please share a story or example for each.
I wish someone would have told me how society would perceive me and Marqus. We are Black. We were young when we got started, and Marqus was notably disabled. That means in the start, when we didn’t have a name for ourselves, every decision we made, every meeting we entered, every word we spoke had to be calculated on our end. Functioning like that until honestly 2021, takes a toll on the body. The driving force to keep me going though was the desire to fulfill my brother’s dream and the people who supported us on the way.
Keep all passwords and log-ins centralized. When we turned over our operations to our current Operations Manager, things were a mess. Had we been a little more organized in the beginning, it would have saved Abby so much time during her first year of working with us. The log-ins for YouTube were somewhere in Marqus’ computer. The log-in for Tech Soup was in my email. The website, the sponsorship portals, the bank account, all of those passwords were on Post-It notes in my bags or written down on prescriptions somewhere in Marqus’ room.
Boards of Directors are essentially your first staff. I didn’t realize that until they really started working to build out the programs and started teaching me how to fundraise.
Give volunteer staff and interns one clear role. People want to help. That’s the beauty of opening up about our SCD journey and working with so many new staff, volunteers, interns, etc. In the beginning though, I was so focused on dollars, that I didn’t realize until a couple of years in that in-kind services are extremely important and helpful for nonprofits with small budgets, especially in those start-up years. For example, having a pro-bono lawyer was huge. Another example is a company allowed us to use their conference room to host a huge advocacy dinner. Those services and spaces allowed us to grow the organization.
Take time for yourself. In the early days, we ate, slept, breathed Sick Cells. As we grow as an organization, I am learning that I need to ensure a work life balance so that I’m my best self at work. That’s something we encourage our staff to do, too.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger.
Through my work at Sick Cells, I strive to improve the quality of life and care for people living with SCD. I hope to inspire a movement that creates everlasting change, by helping shape public policy, educating the SCD community to be highly engaged advocates and harnessing the power of impactful storytelling. Through these efforts we will end the stigma of SCD and create greater awareness in the general public overall.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
One of our board members and mentors always says: “Stay the course.” We have a clear mission and vision for Sick Cells. There’s also a clear driving force for me as the nonprofit leader, which has only become clearer since Marqus passed away in 2020. So long as I stay the course and honor our mission, we will achieve success. I’ve been in situations where I’m scared. In September of 2020, I was invited by the First Lady to a roundtable discussion at the White House. This event was 60 days before one of the most contentious elections in my lifetime, COVID was running rampant through the United States, there weren’t vaccines yet, and I had been sheltering in-place in at my parents’ house. Upon getting the invite to go in-person to this event, I cried. I was scared. I was scared about the pandemic. I was scared about being accidentally involved in politics, and I was scared that I would misrepresent Marqus and our family. Our board member said, “Stay the course. You don’t get opportunities like these every day.” Between those words and Marqus in my heart, I spoke clearly and defiantly that day. I barely remember the actual moment, but the outpouring was huge.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them.
I’d really like to meet and speak with Issa Rae. A Sick Cells documentary is still the one thing that keeps me up at night. I made a promise to Marqus to ensure that it’s made. I have eight years of footage documenting our lives and now we have years of other stories archived through our programs. It can’t just be a small documentary, though. The public needs to see it in order to really elicit change.
Issa Rae is brilliant at telling stories from the Black community in a way that makes them stories for everyone to digest. She weaves humor into tough topics; makes life relatable even when it’s someone that doesn’t look like or live like you. Her artistry is what we need to really make SCD a household name and break the stigma that weighs us down.
How can our readers further follow your work online?
You can learn more about our work and/or get involved and donate at SickCells.org. You can also get involved in any of our programs through our Get Involved page and our Publication page.
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Heroes: Why & How Ashley Valentine of Sick Cells Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.