The gift of life
No one should have to worry that they won’t be able to afford a life-saving treatment for themselves or a loved one. The search for a matched donor and the verification process can get expensive, and we know that a lot of South Africans can’t afford to take on serious medical bills. That’s why, in November 2018, we launched our Patient Assistance Programme. This programme is designed to help South African citizens or permanent residents who need a bone marrow transplant but do not have the money to pay the associated donor related costs. Depending on the patient’s need, the SABMR can either partially or fully cover the costs of the search for, testing, and verification of a suitably matched bone marrow donor at no cost to the patient. If a donor is found, the SABMR can also extent the approved funding towards the stem cell procurement process, the actual procedure of collecting a donor’s healthy stem cells for transplant. The patient never receives an invoice and they never have to worry about paying us back. It’s a gift from us – and for some patients, it’s a gift of life.
Since we started this programme last year, the SABMR has facilitated the donor search and stem cell procurement for seven patients completely free of charge. Most of these transplants have been children whose families have not been able to provide the donor related funds.
How it works
So how does the programme work? First, a request for assistance comes from the patient’s treating physician, who fills out an application form stating the need for the transplant and the patient’s financial status. The application is then sent to the SABMR Medical and Ethics Review Panel (we call it “MERP” for short), a subcommittee of local transplant physicians who thoroughly examine each application. The MERP takes into account the clinical feasibility of the transplant and reviews the funds available at SABMR to sponsor that patient. So far, we’ve had sufficient funds to cover all approved applicants.
By the time an application is submitted, we’ve actually already done a preliminary donor search for that patient. That first phase is free of charge, because the patient might be only partially tissue typed. (To learn more about what tissue-type testing is, check out our piece on Bone Marrow Myths). The same might be true of the donor, many of whom were only partially tested when they registered with the SABMR or another registry. (Today, however, all donors newly recruited by the SABMR are fully typed at the highest resolution.) Because both tests are only preliminary, we can’t verify whether or not the patient and donor are an exact match, but we just want to make sure that there’s a potential match somewhere out there before we move any further.
After this, Phase 2 begins, where the donor search is formally “activated.” In Phase 2, the patient is sent for full tissue-typing and the donor search is repeated, creating a more informative shortlist of potentially matched donors based on the patient’s full genetic typing. We then arrange for the donors on the shortlist to be fully typed so we can see whether or not they’re the right fit (it sounds a bit like online dating, right?!). Because it includes blood tests, couriers to and from international registries, and lab costs, Phase 2 is where costs come in. This is where the SABMR can assist if there’s financial need.
Once the donor has been verified as a full match for the patient from a fresh blood sample, we move on to Phase 3, donor procurement. This includes the donor’s medical examination as well as all of the logistical arrangements for collecting the donor’s stem cells and getting them to the patient on the right day, at the right time, in the right place. It sounds pretty simple, but there’s actually a long list of things that need to go exactly right for this to run smoothly, and our team works really hard to ensure that it does. Our Deputy Director, Terry Schlaphoff, once equated the logistics of donor procurement to the planning of a military operation.
Let’s get specific
Who can apply? The patient assistance programme is usually for patients without medical aid who are from areas where community fundraising initiatives to raise the necessary amount is unlikely. But it’s also for patients who do have medical aid but that aid does not cover unrelated donor search, testing or procurement even after an appeal. To qualify for the programme, patients must be classified as either H0, H1, or H2 according to their household income as per governmental regulation. To find out where you fall on this chart, check out the Department of Health’s Subsidized Patients Page.
The goal of the patient assistance programme is to fill the monetary gap for patients in regard to donor search, testing and procurement, which means that it doesn’t cover the cost of the patient’s actual transplant. The transplant cost is usually covered in one of three ways. If the procedure is completed at a state facility with an active transplant program like Cape Town’s Groote Schuur Hospital, the state covers the cost of the procedure. Some medical aids will cover the transplant procedure cost but not the cost of the donor search or any other donor costs. And other patients have been able to fundraise enough for the transplant costs, but not enough for the donor search. That’s where the SABMR comes in: to fill that gap and help facilitate and fund all of the steps leading up to the actual transplant.
Supporting the fund
The SABMR’s patient assistance programme is supported by the National Lotteries Commission (NLC), which has committed to providing the SABMR with sufficient funds to facilitate transplantation of six local patient for one year. This funding is given specifically for this programme, meaning it cannot be used elsewhere.
In addition, every year at Christmas time, we do a gift-giving campaign on BackABuddy.co.za called Give a Little, Save a Life. The campaign is an opportunity to donate to the SABMR Patient Assistance Programme either in your own name or in a loved one’s name as a holiday gift. All money donated during the campaign goes directly to the Patient Assistance Programme, and when you donate, you are automatically entered into a massive prize pool of over R100,000 in prizes! Last year’s drawing included prizes like a weekend away to Franschhoek for two, fine dining dinners, spa treatments, movie tickets, perfumes, and more. The drawing is made every year on Valentine’s Day, the 14th of February.
Last year’s goal for the Give a Little, Save a Life campaign was R300,000, and we beat that goal with a total of R302,000 raised. This meant we had enough to sponsor four extra patients beyond the six patients we’re guaranteed by the NLC, just from your donations. And that was only the first year of the campaign; this year, we hope to do even more! Give a Little, Save a Life runs annually from the 1st of December to the 10th of February. Make sure you check out our donate link on BackaBuddy.co.za and give the perfect gift to your socially conscious loved one this year.
We need more donors
Unfortunately, saving lives is not just about having the money to do so. Patients in need of bone marrow transplants tend to face three major hurdles: the financial burden, the availability of the donor, and time. While the patient assistance programme helps patients overcome that first hurdle, there still must be a matched donor available and enough time in the patient’s diagnosis to prepare for and perform a transplant. Remember, the chances of finding a matched donor is just 1 in 100,000. That’s why, even though we had enough money to fund ten patients, we have only been able to allocate that funding to seven so far who had potential donors available.
More donors on the registry means a higher chance that we’ll be able to put this program to good use in saving lives. And because international donors are substantially more expensive than local donors (an average of R400,000 to R500,000 for the full search, testing and procurement process vs. R200,000 for local donors), we really need to use local donors as often as we can. That makes the donor search and procurement cheaper, which means we have more funds to allot to more patients. We specifically need more Black and Coloured South Africans to register as donors to help this programme reach its full life-saving potential.
So – become a donor! There are a lot of ways to register for the SABMR. Many blood donation drives offer the option to register, or you can apply to become a donor directly on the Registry’s website. The SABMR also offers at-home sampling kits, available at many locations nationwide, with a free collection service. All it takes to register is a simple cheek swab. For more information, check out their website at www.sabmr.co.za, call (021) 447-8638, or email donors@sabmr.co.za.
