We Asked The Experts

Just before Covid struck, AIMS was lucky enough to interview 3 of the most respected and experienced HSCT practitioners on the planet - Dr Guillermo J. Ruiz-Arguelles, from Clinica Ruiz, Puebla, Mexico, Dr Denis Fedorenko, from Pirogov Hospital, Moscow, and Dr Majid Kazmi, from King’s College Hospital and London Bridge.

You asked: We listened! We asked the HSCT community what they wish they’d known before embarking on HSCT, and we asked those at the beginning of their HSCT journey what they’d like to know. We narrowed it down to the questions below, and we asked each practitioner the same questions for parity.We think that this footage will help you to dispel any misinformation that you might be hearing from your neurologists - remind them that these are highly experienced HSCT practitioners at the cutting edge of this treatment. They know what they’re talking about!

These are the questions that we asked the HSCT specialists:

1. How much does it cost, and how long are your waiting lists, and how long will I be away from home?

2. Which type of MS (RRMS, PPMS, SPMS) is HSCT most successful for? What are the success rates? Will my disability improve from treatment?

3. What is the mortality rate at your clinic over the last 5 years?

4. How many patients have you treated over the last 5 years?

5. What protocol do you follow, and what is the process day by day whilst I am at the facility?

6. What complications are possible? Are there specialists available at the clinic to deal with non-HSCT related complications i.e. other illnesses, or injuries? Will this be an additional cost?

7. Am I likely to encounter fertility issues after HSCT? Should I freeze sperm/eggs/embryos prior to HSCT?

8. What is going through the chemotherapy like? Will I require medication after the treatment when I return to the UK? Is there a follow up procedure with your facility after the treatment? What should I do if I become unwell when I return home?

9. Are there problems with a language barrier? Will I be able to understand the staff at the facility? Will I need vaccinations before travelling to the facility?

10. What is the maximum EDSS that you treat? Will you give me a new EDSS when I arrive at the facility to ensure accuracy?

11. What other conditions can you treat at your facility with HSCT?