FAQ
Yes there is! Bone Marrow Transplantation is the only definitive cure for sickle cell anemia. Replacing your child’s faulty bone marrow (stem cells) from which red cells originate, with those obtained from a healthy compatible donor. Today, BMT outcomes have constantly imporved to the point that, with experienced physicians, children with a compatible family member can currently expect over 95% cure with normal of health-related quality of life.
Who can be a donor for the Bone Marrow Transplantation (BMT)?
The donor for BMT has to be matched with patient in their tissue type (matched HLA).
How do I know or identify a compatible donor for my children in the family?
HLA-typing is the test required to identify compatible donor(s) in the family. Generally, the test is done for the sibling thus a brother or sister and more rarely mother or father. We recommend families to do high-resolution sequence-based typing of HLA A, B, C, DRB1, DQB1 and DPB1. This top-level HLA-typing is offered free - at no cost by Bone Marrow Transplantation Ghana thanks to the good works of DKMS Germany
Does the donor face any health problem after donating the peripheral blood stem cell?
Not at all! The procedure takes just about 3 to 4 hours. It is similar to blood collection. The donor would be given anesthesia and will feel no pain during the donation. Alternatively, Doctors use needles to withdraw liquid marrow from both sides of the donor's pelvic bone. The donor returns to normal 2-3 days after the donation.
How much would it cost to cure my child through Bone Marrow Transportation (BMT)?
The cost of transplant varies and may range from 200,000USD to 600,000USD in western countries. However, Bone Marrow Transplantation Ghana has managed to bring down that cost here in Ghana to 20,000 USD for HLA matched sibbling and 25.000 USD for haploidentical BMT inclussive all medical and folow up expenses but with no compromize to quality assurance and high standards and outcomes will be comparable to international standards
Is it possible for the mother to donate stem cells to cure her child?
Yes it is possible! Haploidentical Bone Marrow Transplantation (BMT) is a procedure by which instead of fully HLA matched family donor, a half HLA matched parent (mother or father) but mostly the mother or sibling is the donor of bone marrow or blood stem cells for the BMT?
Can my child be transplanted immediately after getting a match?
Once there is a match, we do a detailed pre-transplantation evaluation to assess both the patient and the donor. Fortunately, today it is possible to control both high iron levels and reverse organ damage using appropriate medication. It is well established that patients with low iron overload and limited organ damage get better outcomes with transplants. Based upon your child’s condition the physicians will initiate the process of preparing the child for the transplantation – a process known as down-staging using aggressive iron chelation and hydroxyurea therapy. Children who are well managed may only need minor course correction and preparation which could happen in a few weeks. For the others, depending upon the extent of existing damage to the body, the child may take anywhere between 3 months to a year to be able to reverse as much damage as is possible. A child is eventually offered the transplantation when the medical team is convinced that enough has been done to prepare the child for superior outcome. It may be possible that some children do not respond to the down-staging process adequately. For such families, the physicians will reevaluate the risk-benefits of transplantation and share the same with the families to enable them to make informed decision.
How can Bone Marrow Transplantation Ghana cut down the cost that much without compromising on quality?
BMT Ghana would use less expensive standard oral busulfan which has been used successfully for decades. The use of expensive drugs for high-risk cases is hardly justified when patients can be down-staged into a lower-risk category with aggressive chelation and hydroxyurea therapy. In general, what really makes the difference is how the patient is prepared for BMT rather than the drugs used.
The problem is that too often families are self-referred to transplant centers which do not have the set up for long periods of preparation. This should really be done by specialized sickle cell centers. Moreover, the use of new and more expensive drug combinations like thiotepa and treosulfan are associated with unknown risks of permanent infertility which may not be the case for the standard combination of oral busulfan with cyclophosphamide.
Many centres do the transplantation for sickle cell diseases within the same setup which has been created keeping in mind the needs of more complicated and higher risk transplantations like those for malignant disorders (cancers). The additional cost of complex air purification systems etc. which are unnecessary for sickle cell anemia transplants get’s added to the transplantation cost inevitably. Some institutions of course will have substantial overheads and public relations costs which inevitably are borne by patients and their families. Finally, the expensive cost of physicians are also added to the cost of transplants but our physicians are devoted and are passionate to curing than money making therefore they are doing it for free of cost.
The problem is that too often families are self-referred to transplant centers which do not have the set up for long periods of preparation. This should really be done by specialized sickle cell centers. Moreover, the use of new and more expensive drug combinations like thiotepa and treosulfan are associated with unknown risks of permanent infertility which may not be the case for the standard combination of oral busulfan with cyclophosphamide.
Many centres do the transplantation for sickle cell diseases within the same setup which has been created keeping in mind the needs of more complicated and higher risk transplantations like those for malignant disorders (cancers). The additional cost of complex air purification systems etc. which are unnecessary for sickle cell anemia transplants get’s added to the transplantation cost inevitably. Some institutions of course will have substantial overheads and public relations costs which inevitably are borne by patients and their families. Finally, the expensive cost of physicians are also added to the cost of transplants but our physicians are devoted and are passionate to curing than money making therefore they are doing it for free of cost.
How long must my daughter stay in the hospital after BMT?
After BMT, the child needs an average stay of 45 days in the hospital
How long does it take to become transfusion independent after Bone Marrow Transplantation?
Most children become transfusion independent within a month after the transplant. However, it may take a little longer for cases of BMT from AB0 incompatible donors. Late rejections and transplant-related complications may however, occur and regular check up should be carried out at least for the first year following the BMT after which the child should resume life as normal without sickle cell anemia.
Are there any side effects of BMT for SCDs?
Although bone marrow transplantation offers over 90% success cure rate from sickle cell anemia, it also has an average of about 40% to 50% chances of permanent infertility.
At what age should BMT be perfomed?
It is best Bone Marrow Transplantation be done as soon as possible especially when the child is still young. However, a transplant can be safely postponed for 6-8 years of age, but it should definitely be done before 15 years of age to have the most chances of preserving fertility.
Has BMT any mortality risk rate?
BMT has mortality risk rate from 3% to 5% depending on the type of donor and the age of the child (receipient)
What is a BMT rejection?
When there is significant complication where patient’s immune system destroys the new bone marrow. This is called graft rejection
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