Transplantation and aHUS – a top topic

Transplantation of aHUS dialysis patients is a priority and  top topic for the aHUS alliance.
Transplantation of those with aHUS  has been a challenge, not just clinically because of the use immunosuppressant drugs, potential injury to the donor kidney, rejection and infection ;but also because this  particular  aHUS patient group, despite facing these risks, is frequently discriminated against in scoping decisions by health priorities for the use of eculizumab. This is preventing them the opportunity of leading a life free from dialysis.
A recent study by the Modelli de Antrade Group from Brazil set out to assess the efficacy and safety of eculizumab in a small group of kidney transplant patients suffering from aHUS. ( a copy of the article is online and can be read by clicking here)
The study carefully selected a group of 7 aHUS diagnosed patients and monitored, at increasing intervals ,what happened to them post transplant after being treated with eculizumab.
5 patients received eculizumab therapeutically with manifestation  of TMA occurring between 1 to 60 days after transplant, and a diagnosis of aHUS made. 2 known aHUS patients were given eculizumab prophylatically in accordance with the Zuber Group protocol.
The conclusion of the this small study was that both prophylatic  and therapeutic use of eculizumab presented  a very favourable clinical response and was well tolerated.
Two issues arose. One relapse occurred in the therapeutic group with a suspicion that dose levels might have been too low at that point. One of the prophylatic treated  patients died from an infection- Aspergillius-  in the surgical wound and donor kidney causing sepsis, illustrating the risks of surgery even with eculizumab.
The article also referred to a number of articles of case studies on this topic ( see referenced articles  20 to 33 ) and as the Modelli de Antrade et al  article observes “The use of eculizumab in kidney transplant has been chosen as  question of priority deserving investigation in an initiative of cooperation between patient association and the global  Registry of aHUS” .
The more that is found out about this topic the better the treatment for all aHUS patients on dialysis facing transplant , or diagnosed  after the transplant operation. Also the better the evidence to stop any discrimination against those who are living with the end state ,that eculizumab for new onset aHUS patients has prevented ,thanks to availability of such an effective treatment.
A top topic in the aHUS patient community.
Looking for more information on aHUS in Brazil?  Wish to connect with others around the world interested in aHUS advocacy, treatment, and research?
aHUS in Brazil
SHUa Brasil: HPN e SHUa – Doenças Raras
Grupo de estudos brasileiro de SHUa, síndrome Hemolítica Urêmica atípica
Connect with people and groups world wide with interests in aHUS advocacy, treatment, and research
aHUS Alliance:  Our global network of Clinicians & Investigators
aHUS Patient Advocacy & Associations

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