Across the continent, the prevalence of blood-related diseases such as leukemia, lymphoma, and sickle cell anemia is rising. In Nigeria, diagnosis of sickle cell anemia cases is projected to rise over 60% by 2050. Despite these sobering statistics, these diseases can be effectively treated through bone marrow or cord blood transfers for suffering patients. The hitch? A worldwide lack of donors of African origin means that many Africans will die without treatment. Ara, a pan-African bone marrow and cord blood donor recruiter, is changing the narrative through its ambitious plan to recruit 30,000 bone marrow donors by the end of 2018. Ayiba’s Akinyi Ochieng spoke to Team Ara co-founder Ron Babalakin about the prevalence of blood-related conditions across the continent, and how Ara is poised to make a change.
Who are the core members of team Ara? Why were you drawn to work together on this issue?
I’m Nigerian and I live and work in NYC. I graduated from University College London in 2012, and I moved to the US in Summer 2013 to work in the Venture Capital industry. Currently, I am an associate at a VC firm. The Ara Team also includes my friends Diepiriye Anga (Associate at Kaye Scholer LLP), Seun Adebiyi (Project Manager at the American Cancer Society), and Aisha Babalakin.
None of us have particular medical training, but Seun works in the public health sector for the American Cancer Society. A cancer survivor, he also founded the Bone Marrow Registry in Nigeria, and is passionate about getting more people on Bone Marrow Registry.
All of us involved have lost friends, siblings, and loved ones to lymphoma and leukemia. These people were all young Africans, who would have had a higher probability of surviving these cancers if there was a greater representation of Africans or those of African descent on accredited bone marrow registries. I’m passionate about increasing the number of people on the bone marrow registry, because I truly believe that we can help save a life.
Why is incidence of sickle cell anemia, leukemia, and lymphoma so high among Africans?
Generally, cancer prevalence is expected to rise as a result of steadily growing and ageing populations in both developed and developing countries, increased exposure to carcinogens, current trends in smoking prevalence, and the growing adoption of unhealthy lifestyles (according to the WHO). Blood cancers are no exception.
Sickle cell anemia is genetically inherited. Simply put, Africans are more genetically disposed to have sickle cell anemia than any other population in the world.
At the moment, the prevalence of leukemia, lymphoma, and sickle cell anemia is rising on the African continent. These diseases can all be effectively treated by performing bone marrow or cord blood transfers on suffering patients. A donor of similar genetic heritage as the patient is required to provide the bone marrow or cord blood necessary for the transplant.
However, the dearth of donors of African origin on bone marrow and cord blood registries worldwide means that many leukemia, lymphoma, and sickle cell anemia patients of African origin die without being effectively treated for their disease.
Why is it more difficult for Africans to find bone marrow donors?
There are several reasons why it’s more difficult for Africans to find bone marrow donors.
Firstly, there’s a lack of a donor culture. Superstitious religious beliefs and prior bad experiences make many Africans wary of blood or bone marrow donation. There’s also a lack of information—people are not informed about the potential cures for sickle cell anemia and blood cancers.
Attention-grabbing diseases such as malaria, HIV, and most recently Ebola in Africa have been the focus of many local and foreign healthcare initiatives. However, the incidence of cancer is rising on the continent, and it is important that we take steps towards cancer control. One of the most effective ways of implementing cancer control is to have a robust bone marrow registry. It is a health asset to the continent.
How can these diseases be treated?
There are several ways to tackle the diseases, including chemotherapy for cancer, and medication for sickle cell anemia. Many people live with the sickle cell disease all their lives. However, a bone marrow or stem cell transplant is the only known potential cure for cancers like leukemia and lymphoma, as well as blood diseases like sickle cell.
There are two ways to donate. The first is peripheral blood stem cell (PBSC) donation. PBSC donation harvests the stem cells from the blood. It is a non-surgical procedure. On the day of donation, blood is removed through a needle on one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. This is the more common method and it is used in 70% of cases. You may feel muscle aches for four to five days after the procedure, but some donors have reported feeling no pain thirty minutes to an hour after the procedure. Seventy-five percent of all PBSC donations are completed in one session, which may take up to eight hours.
The second way to donate is through your marrow. Bone marrow donation is a surgical procedure, and it occurs in only 30% of cases. It is often used on children because they experience a higher success rate from marrow transplants as opposed to blood stem cell donation. For marrow donation, local or general anesthesia will be used so there is no pain when the marrow is collected. After the procedure, donors generally feel discomfort and some pain in their lower back for one or two weeks.
How many accredited registries are there across the continent? Can a South African, for example, register on a Kenyan registry?
There are only two internationally accredited bone marrow registries on the continent: The South African Bone Marrow Registry (SABMR) and the Bone Marrow Registry Nigeria (BMRN). As of January 2015, there were 68,222 people registered on these registries (67,875 in South Africa, 347 in Nigeria). This means that only 0.006% of the entire continent’s population (1.2 billion people). Even worse, only 6% of those on African registries are of African descent.
Anyone can register on any Bone Marrow Registry, in the country in which they find themselves. However, the only two internationally accredited bone marrow registries on the African continent are those of South Africa and Nigeria. If there is a Kenyan registry, it’s not internationally accredited (yet), and so donors will not be internationally searchable. Bone marrow registries get international accreditation when they join BMDW (an international organization that ensures that any donor registered on any BMDW member in the world is internationally searchable).
What usually happens to Africans who are diagnosed with these conditions?
Patients with mild sickle cell anemia can usually live for a very long time (post fifty). They treat their crises as they come and take medication daily.
Some have success with traditional cancer treatments such as chemotherapy and immunotherapy. However, mortality rates are still very high. Bone marrow/stem cell transplants are the only known cures for blood cancers.
How does Ara plan to recruit 30,000 new bone marrow donors across the continent? How did you decide on this number?
We chose the 30,000 number because we wanted to aim to get about 50% of the current bone marrow donor population registered by 2018. Giving ourselves a target also helped make sure we developed a robust donor recruitment strategy that would help us reach that target and surpass it. There are many obstacles to making this happen and they are also the reasons why there are few bone marrow donors registered on the continent.
We’ll achieve our goals by conducting bone marrow drives, connecting people through social networks, getting international accreditation for HLA typing labs in Nigeria and other locations, and setting up cord blood storage and donation facilities in Africa.
We’ll conduct bone marrow drives each year in different cities across the African continent, starting with our drive on Monday, December 21st in Lagos.
The continent is vast with many areas lacking connectivity apart from mobile networks. We’ll leverage social networks through mobile to keep in touch with registered donors, so that they can be easily called upon should they be needed for a transplant.
It’s important that we obtain international accreditation for HLA typing labs in Nigeria and other locations so that buccal swabs won’t have to be flown out of the continent to get “type”’ before the results are put on the registries.
Setting up cord blood storage and donation facilities can help in situations where there isn’t an adult donor who is a close match for a patient. Cord blood doesn’t need to match as closely as bone marrow or peripheral blood for a successful transplant.
Can you tell us a little bit about your fundraising campaign? Why did you choose to use Indiegogo as a fundraising platform?
We have launched an Indiegogo campaign to raise $7,500 for our December drive, and all future Ara drives and initiatives. The money shall go towards creating educational material, providing security for the event, and developing software to record all bone marrow donors electronically. We encourage everyone to donate so that we can reach our goal!
The only fundraising platforms we thought of using were Indiegogo and Kickstarter. We decided to use Indiegogo because of the option for “flexible funding” as opposed to the “all or nothing” funding model Kickstarter has.
(“All or nothing” funding means that if we don’t reach our funding target by the stipulated time, all the money raised will be returned to the donors.)
Ara’s first donor drive is on December 21st in Lagos, Nigeria, and the company is collaborating with the Bone Marrow Registry in Nigeria (BMRN) and Delete Blood Cancer (DKMS) to recruit the first 2,000 donors in Lagos.
The Bone Marrow Drive will feature stalls where potential donors can learn more about the reasons why Ara exists and about the bone marrow donation process from trained Ara volunteers, booths to register as a bone marrow donor, refreshments, and various giveaway items.
Join us at Plot 1261 Adeola Hopewell Street (building beside Nigerian Law School), Victoria Island, Lagos on Monday, December 21, 2015 from 9 am – 7 pm.
Facebook: Ara African Bone Marrow Program