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27 And In Need Of A Bone Marrow Transplant: You Could Be The Cure

Shaunise Robinson shares how she is using her potentially fatal diagnosis to raise awareness in the need for diversity in bone marrow donors.

Human Interest

The first time that I had ever heard of Be The Match was years ago when Good Morning America co-host Robin Roberts announced her cancer diagnosis.

In the campaign that acted as a 30-second television spot, Roberts said, “I have a chance to survive blood cancer because my big sister answered 'yes' to being my marrow donor. You can join the Be The Match Registry today at BeTheMatch.org, and stand ready to cure someone with a disease like leukemia."

It was a powerful call-to-action that made me feel some type of way about resting on my laurels as opposed to doing what I can for those in need. The potential to be someone's cure really spoke to me. I found myself signing up to register as a donor in the registry shortly after.

But I stopped myself from continuing with the process after receiving some input from my mother who felt that it was a painful process and just something that black people just “don't do". That phrase is something that stops us in our tracks as a community a lot, sometimes to our detriment – that day five years ago was no different.

The Urgent Need for Diversity in Bone Marrow Donors

My encounters with Be The Match came full circle for me the other day when I received an email from a representative who felt like Black History Month would be the perfect time to relay a message to our readers that was a simple, clear, yet resounding, “We need you." Even though Roberts' campaign led to over 40,000 new donors signing up, there is still an undeniable void amongst one group of people in the registry: black people.

Patients are most likely to match a donor that closely shares their ancestry. Black people have historically had the lowest odds of finding a match compared to other populations in the registry. Why? Because…

  1. Black people have the most diverse genetic tissue types compared to other ethnicities.
  2. Not enough black people volunteer as bone marrow donors in the registry.

Currently, we only make up 6% of the registry, which is a far cry from the 51% that account for white people in the registry. As the global leader of umbilical cord blood transplants and bone marrow transplants, Be The Match is often the only hope for patients looking to find a cure for blood-related cancers like leukemia and lymphoma, as well as sickle cell anemia, and other anemic/blood disorders. It should be noted that bone marrow is so far the only cure out there for sickle cell anemia.

Since we just make up 6% of donors in the registry, bone marrow transplants that are a match can be hard for many patients to find. And, without access to qualifying donors, a cure is less likely for recipients to find. You would think that if you have siblings, you'd be covered, like in Roberts case where her sister was a match for her and her cancer was cured.

But Roberts is the exception, not the rule. In fact, 70% of patients do not have a fully matched marrow donor in their family, which is why Be The Match is so pivotal to offering a cure to those in dire need of finding a viable marrow transplant, like Shaunise Robinson for example.

The Importance of Be The Match

Shaunise Robinson at an Aplastic Anemia Awareness drive

Shaunise Robinson is a 27-year-old third grade teacher who believes her life purpose is to help children through education. The mother of one (a son who turned 4 this month) is a doctoral-degree candidate at Texas A&M. But this past fall, a fulfilled life took an unexpected turn when in November 2016, Shaunise was officially diagnosed with aplastic anemia, a really rare blood disorder that causes all of her blood counts to be severely low, causing severe fatigue, shortness of breath, a very weak immune system, and profuse bleeding (because blood cannot clot).

Eventually, her bone marrow may not be able to make enough new blood cells, which can lead to many more health problems, including an enlarged heart, irregular heartbeats, heart failure, infections, bleeding, and even death.

Regarding the disorder, Shaunise says:

“They don't know how this happened, they don't know where it came from. In most cases, you'll never really find out how you got it, it just happens. It doesn't run in your family. It has nothing to do with that."

She remembers being in the middle of teaching a class when she got the call that confirmed all her concerns about her health. Earlier in that week, she had gone to her OBGYN and explained an issue she had been having with profuse bleeding. After years of feeling like something was off with her body, but being told again and again that everything was fine, her OBGYN went above and beyond by taking her blood count to find the root of her problems. Tests were ran and her blood counts were revealed to be severely low. She had to rush to the hospital immediately. Doctors believed it was some form of cancer, but after extracting a bone marrow biopsy from her back, they found the real culprit to her health issues: aplastic anemia.

After being connected to a larger hospital, Shaunise was also given the information and connected with Be The Match. She started hosting drives to find a donor and began her journey of raising awareness for the organization and giving a voice to the voiceless, because oftentimes, patients with blood-related illnesses and diseases are young children who can't speak up for themselves.

Shaunise has no donor, can't teach her students (due to potential illnesses she could catch) who miss her as much as she misses them, but she still manages to have an incredible and giving spirit in the midst of her hardship. During my brief call with her, I noticed that her light was undeniable and absolutely radiated, even during a time where most would be overcome by darkness. “I have a lot of faith that I'm going to find a donor and that everything's going to be fine. I feel like I have a purpose and a lot of things I still have to accomplish in life. So, I really don't think negatively about it. I think about it like everything happens for a reason. I'm able to tell people about it that maybe would never have known about it and they're able to join the registry and help someone else. I always think about it that way and that everything happens for a reason and that God's purpose was for me to have this. I don't know the exact reason why, but I know there's a reason why this happened to me."

"I want to make the best of it. I want to raise awareness so that me going through this isn't in vain."

What the Bone Marrow Donation Process Is Really Like

Aside from not knowing about Be The Match, I realized a common theme that stops people from signing up is the fear of the process. People hear the words “extraction", hear about the long needle, hesitance goes into overdrive, and they aren't willing to donate bone marrow at all. I don't blame them, I too fell victim to believing the hype that the procedure was far too painful to endure and thus wiped my hands of the possibility of it. However, former Villanova University defensive back CJ Logan sang a different tune for me.

The now 23-year-old New York-based financial advisor was on the Villanova University football team back in the spring of 2013 when he signed up for the registry. At the time, he was on a football team led by Coach Talley, who believed in giving back to the community in any way that they could and who had a close personal connection to the message of the Be The Match foundation.

After submitting a cheek swab for the registry, CJ wouldn't get a call about a bone marrow donation until two years later in the fall of 2015, during his senior year. He got a follow-up email detailing that he and two other people could potentially be a match for a patient in need of a transplant. He went to a nearby hospital where they drew some extra blood. “About a week or so later, they told me, 'Hey, you're the definite match. Are you interested in doing it? Can you come in?' I was like, 'Absolutely'," he says with a smile in his voice, “As far as I was concerned, if it was my mom or my sister in that position – because I was donating to a 33-year-old international woman – I definitely wish that someone who had the opportunity to make a difference would step up and do it."

CJ Logan after his donation to a bone marrow transplant recipient

The morning of December 15, 2015, CJ went in for surgery to begin the bone marrow donation procedure. “I came in early - 5:30, 6 am. I gave some more blood. I talked to the nurses. I met the surgeon who was going to do the operation. I relaxed. Like an hour and a half later, I remember them talking to me and (after that) I just (remember that I) woke up. It was because of the anesthesia," he laughs. “It was very quick. Afterwards, I stayed in the hospital just because. The following morning, Coach Talley had one of the assistant coaches pick me up from the hospital."

Despite the intimidating length of the needle, CJ said he felt no pain at all during his procedure because of the drugs he was given. In fact, the only pain he felt was more like a soreness in his back for the first couple of weeks post-surgery and said the discomfort was comparable to losing a game to Delaware and the “battle wounds" that'd include. “It was a little stiff. But with that being said, I didn't think it was too discouraging. If anybody were to get a call saying they were a match, I would 100% encourage them to do it."

"I never thought that as an individual that I could make that big of an impact on someone else's life."

It being all about the bigger picture was a recurring theme in both conversations I had with Shaunise and CJ, just told through different perspectives. Although he didn't know much about the woman who recieved the life-changing donation, he felt blessed to be able to change and extend someone's life and that was louder than any fear. "It's a blessing. If there were any doubts about me making it to heaven prior to that surgery, I hope that secured it," CJ shares with a laugh, "But no, honestly, it was a remarkable experience, because I never thought as a single person, as an individual, that I could make that big of an impact on someone else's life. So that's definitely something that I carry with me."

The Bottom Line

In response to anyone who still might have reservations about joining the registry, Shaunise states, "One of the biggest things right now is the registry isn't that diverse. I'm an African-American. You have to find a donor that represents your DNA. My best match is going to be someone who shares my ancestry, an African-American. The problem is, African-Americans represent 6% of the registry. Hispanics represent 10%. Asians represent 6%, so if you are of a diverse background, we're not really represented in the registry. This could happen to anybody. I'm 27 years old. I was healthy. I was active my whole life. This happens to anyone, little kids. I met this two-year-old girl. I can't imagine being a child going through this. For people who are hesitant, we have to think beyond that. We need to help each other."

Shaunise Robinson's story was exactly the thing that I needed to remember how much good could happen from the smallest thing. Registering is simple and to the point, the donation process is straightforward and includes anesthesia, and the end result is saving someone's life who might otherwise not have a solution to what's slowly killing them or making them ill. I was reminded of the power of community and again the ripple effect that comes with doing the right thing. Not to mention the good karma.

"If you are of a diverse background, we're not really represented in the registry. This could be anybody."

I think as black people we need to make ourselves present in all spaces, especially spaces where there is a demand for diversity. It's great that we're on more television shows, that we can shout FUBU anthems from the mountain tops, and that we can shop black, but we also need to make sure that we show our faces in these places and uplift our community health-wise as well. Shaunise and CJ are right, it could be any of us.

I hope to someday be the match for someone in need. Until then, I am an active member of the registry, on-call to be a donor at any time for anyone. At least, until I'm 65.

So, will you join the registry?

Visit Be The Match today and find out ways how to be of service to people fighting blood-related illnesses and diseases and how to support the cause by joining the bone marrow registry.

ACLU By ACLUSponsored

Over the past four years, we grew accustomed to a regular barrage of blatant, segregationist-style racism from the White House. Donald Trump tweeted that “the Squad," four Democratic Congresswomen who are Black, Latinx, and South Asian, should “go back" to the “corrupt" countries they came from; that same year, he called Elizabeth Warren “Pocahontas," mocking her belief that she might be descended from Native American ancestors.

But as outrageous as the racist comments Trump regularly spewed were, the racially unjust governmental actions his administration took and, in the case of COVID-19, didn't take, impacted millions more — especially Black and Brown people.

To begin to heal and move toward real racial justice, we must address not only the harms of the past four years, but also the harms tracing back to this country's origins. Racism has played an active role in the creation of our systems of education, health care, ownership, and employment, and virtually every other facet of life since this nation's founding.

Our history has shown us that it's not enough to take racist policies off the books if we are going to achieve true justice. Those past policies have structured our society and created deeply-rooted patterns and practices that can only be disrupted and reformed with new policies of similar strength and efficacy. In short, a systemic problem requires a systemic solution. To combat systemic racism, we must pursue systemic equality.

What is Systemic Racism?

A system is a collection of elements that are organized for a common purpose. Racism in America is a system that combines economic, political, and social components. That system specifically disempowers and disenfranchises Black people, while maintaining and expanding implicit and explicit advantages for white people, leading to better opportunities in jobs, education, and housing, and discrimination in the criminal legal system. For example, the country's voting systems empower white voters at the expense of voters of color, resulting in an unequal system of governance in which those communities have little voice and representation, even in policies that directly impact them.

Systemic Equality is a Systemic Solution

In the years ahead, the ACLU will pursue administrative and legislative campaigns targeting the Biden-Harris administration and Congress. We will leverage legal advocacy to dismantle systemic barriers, and will work with our affiliates to change policies nearer to the communities most harmed by these legacies. The goal is to build a nation where every person can achieve their highest potential, unhampered by structural and institutional racism.

To begin, in 2021, we believe the Biden administration and Congress should take the following crucial steps to advance systemic equality:

Voting Rights

The administration must issue an executive order creating a Justice Department lead staff position on voting rights violations in every U.S. Attorney office. We are seeing a flood of unlawful restrictions on voting across the country, and at every level of state and local government. This nationwide problem requires nationwide investigatory and enforcement resources. Even if it requires new training and approval protocols, a new voting rights enforcement program with the participation of all 93 U.S. Attorney offices is the best way to help ensure nationwide enforcement of voting rights laws.

These assistant U.S. attorneys should begin by ensuring that every American in the custody of the Bureau of Prisons who is eligible to vote can vote, and monitor the Census and redistricting process to fight the dilution of voting power in communities of color.

We are also calling on Congress to pass the John Lewis Voting Rights Advancement Act to finally create a fair and equal national voting system, the cause for which John Lewis devoted his life.

Student Debt

Black borrowers pay more than other students for the same degrees, and graduate with an average of $7,400 more in debt than their white peers. In the years following graduation, the debt gap more than triples. Nearly half of Black borrowers will default within 12 years. In other words, for Black Americans, the American dream costs more. Last week, Majority Leader Chuck Schumer and Sen. Elizabeth Warren, along with House Reps. Ayanna Pressley, Maxine Waters, and others, called on President Biden to cancel up to $50,000 in federal student loan debt per borrower.

We couldn't agree more. By forgiving $50,000 of student debt, President Biden can unleash pent up economic potential in Black communities, while relieving them of a burden that forestalls so many hopes and dreams. Black women in particular will benefit from this executive action, as they are proportionately the most indebted group of all Americans.

Postal Banking

In both low and high income majority-Black communities, traditional bank branches are 50 percent more likely to close than in white communities. The result is that nearly 50 percent of Black Americans are unbanked or underbanked, and many pay more than $2,000 in fees associated with subprime financial institutions. Over their lifetime, those fees can add up to as much as two years of annual income for the average Black family.

The U.S. Postal Service can and should meet this crisis by providing competitive, low-cost financial services to help advance economic equality. We call on President Biden to appoint new members to the Postal Board of Governors so that the Post Office can do the work of providing essential services to every American.

Fair Housing

Across the country, millions of people are living in communities of concentrated poverty, including 26 percent of all Black children. The Biden administration should again implement the 2015 Affirmatively Furthering Fair Housing rule, which required localities that receive federal funds for housing to investigate and address barriers to fair housing and patterns or practices that promote bias. In 1980, the average Black person lived in a neighborhood that was 62 percent Black and 31 percent white. By 2010, the average Black person's neighborhood was 48 percent Black and 34 percent white. Reinstating the Obama-era Fair Housing Rule will combat this ongoing segregation and set us on a path to true integration.

Congress should also pass the American Housing and Economic Mobility Act, or a similar measure, to finally redress the legacy of redlining and break down the walls of segregation once and for all.

Broadband Access

To realize broadband's potential to benefit our democracy and connect us to one another, all people in the United States must have equal access and broadband must be made affordable for the most vulnerable. Yet today, 15 percent of American households with school-age children do not have subscriptions to any form of broadband, including one-quarter of Black households (an additional 23 percent of African Americans are “smartphone-only" internet users, meaning they lack traditional home broadband service but do own a smartphone, which is insufficient to attend class, do homework, or apply for a job). The Biden administration, Federal Communications Commission, and Congress must develop and implement plans to increase funding for broadband to expand universal access.

Enhanced, Refundable Child Tax Credits

The United States faces a crisis of child poverty. Seventeen percent of all American children are impoverished — a rate higher than not just peer nations like Canada and the U.K., but Mexico and Russia as well. Currently, more than 50 percent of Black and Latinx children in the U.S. do not qualify for the full benefit, compared to 23 percent of white children, and nearly one in five Black children do not receive any credit at all.

To combat this crisis, President Biden and Congress should enhance the child tax credit and make it fully refundable. If we enhance the child tax credit, we can cut child poverty by 40 percent and instantly lift over 50 percent of Black children out of poverty.

Reparations

We cannot repair harms that we have not fully diagnosed. We must commit to a thorough examination of the impact of the legacy of chattel slavery on racial inequality today. In 2021, Congress must pass H.R. 40, which would establish a commission to study reparations and make recommendations for Black Americans.

The Long View

For the past century, the ACLU has fought for racial justice in legislatures and in courts, including through several landmark Supreme Court cases. While the court has not always ruled in favor of racial justice, incremental wins throughout history have helped to chip away at different forms of racism such as school segregation ( Brown v. Board), racial bias in the criminal legal system (Powell v. Alabama, i.e. the Scottsboro Boys), and marriage inequality (Loving v. Virginia). While these landmark victories initiated necessary reforms, they were only a starting point.

Systemic racism continues to pervade the lives of Black people through voter suppression, lack of financial services, housing discrimination, and other areas. More than anything, doing this work has taught the ACLU that we must fight on every front in order to overcome our country's legacies of racism. That is what our Systemic Equality agenda is all about.

In the weeks ahead, we will both expand on our views of why these campaigns are crucial to systemic equality and signal the path this country must take. We will also dive into our work to build organizing, advocacy, and legal power in the South — a region with a unique history of racial oppression and violence alongside a rich history of antiracist organizing and advocacy. We are committed to four principles throughout this campaign: reconciliation, access, prosperity, and empowerment. We hope that our actions can meet our ambition to, as Dr. King said, lead this nation to live out the true meaning of its creed.

What you can do:
Take the pledge: Systemic Equality Agenda
Sign up

Featured image by Shutterstock

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