Anyone know how medical tourism to the US works for drug prescription?

[catalinamia]

I'm awaiting assessment for a rare obesity condition - I gain weight on as little as 700 calories a day and cannot lose this weight through diet or exercise, as my metabolism just slows down so there is no way to create a calorie deficit (this is a thing that most people with this condition experience).

I have controlled my weight all my life by eating very little but gained a lot this last year by following misguided medical advice to increase my calorie intake in order to reset my metabolism. I now have no way of losing it again.

I'm in remission from an aggressive form of cancer and being overweight increases my risk of recurrence, which is very high in the first 5 years. If I am diagnosed there is no treatment available yet but a drug is currently in trials in the US that is working wonders for others with the condition. Someone else I know (a US citizen) who was gaining on 700 calories a day has now lost over a stone in only a few months without having to further reduce their intake (they are part of the trial - it hasn't been released in the states yet either). I really want to get this drug and get it as quickly as I can to reduce my risk of the cancer recurring or spreading. But I think it will be a long time before it is approved in the UK. How would I go about getting it prescribed in the US? Would I have to go and live there for a while? I have family there and I run a freelance business that I could run while over there. Or I could get some sort of other visa. I have decent savings. Does anyone know how it works? I'm desperate to lose the weight sooner rather than later. It's also making it harder to exercise because I get so hot and sweaty and I have issues with energy and motivation as it is.

The condition is called Hypothalamic Obesity. The body stores food as fat long before it's met your basic energy needs basically leaving you exhausted and always gaining weight. It's miserable.

Chances of a US visa are pretty slim. Are you sure of your diagnosis?

Most countries have a medical treatment visa.

I doubt you could get on to a trial but as the treatment becomes available you can get in contact with a US doctor or clinic.

You could also look to see if there are any trials in the UK or even other European countries.

Do you know the name of the drug? Is it Tesomet? If so there are UK trials

https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/phase-2b-study-of-tesomet-in-subjects-with-ho-tm008/

You would need to find a clinical trial that is willing to accept you. Visas are fairly routinely issued for trials, though people tend to come for things they have to stay in the US for, like a surgery. the issue is that they can't just give you the drug and you leave. You'd need to be available for follow ups and for refilling the prescription. Many trials have geographic restrictions for this reason. But all US trials are listed on clinicaltrials.gov. That would be the best place to start.

also, depending on the trial type, you wouldn't be guaranteed the drug. You could be in a control arm getting either a placebo or the existing treatment.

medical tourism would certainly be possible if expensive once it's approved by the FDA. I would look for European/UK trials first.

(i live in the USA)

Thank you - yes, I had assumed I'd have to stay there and my plan was more to go once it was approved in the US which I imagine might be a good few years before it's approved and fully available here. I don't have a diagnosis yet and it's not 100% guaranteed I'll get it but I think it looks likely. It's basically a diagnosis you get when have the symptoms I have and all other possibilities have been ruled out. There might be something I don't understand about it but my doctor seems to think it's likely enough to investigate. It's setmelanotide - not sure what the different names are it goes by - possibly Tesomet or Imvicree but it's confusing. A lot of them are promising though so if one doesn't work another may well do. I've got hold of some Ozempic here but so far it's making me kind of ill so not sure I'll be able to tolerate it long enough to see results and a lot of people with my potential condition don't get results. Always a risk of any drug I suppose but I'm at the end of my tether and willing to throw all my money at it!

I’m American. Maybe this will help. If you find what you’re looking for, an email to the institution with your questions will probably produce an answer that gives you all the information you need.
Best of luck to you, @catalinamia

https://www.nih.gov/health-information/nih-clinical-research-trials-you/finding-clinical-trial

It's already available here for genetic diseases, so the questions to ask, is yours a genetic disorder or a side effect of you previous treatment? You said 'all my life' so it may well be genetic.

Does it have the same effect if it isn't a genetic cause?

Dr Sadaf Farooqi at Cambridge Uni is the lead researcher.

https://www.goos.org.uk/resource-centre/latest-news/376-setmelanotide

https://www.mrl.ims.cam.ac.uk/blog/phase-3-trial-shows-the-mc4r-agonist-setmelanotide-leads-to-weight-loss-in-genetic-obesity-syndromes/

I hope you get to try this OP, people make awful assumptions when you are obese, lets hope it works for many people.

Thank you - I've corresponded with Dr Farooqi before but many years ago, before this drug was on the horizon. She was nice then even if she couldn't help.

It doesn't seem to be a genetic issue to be honest although there are plenty of genes that presumably haven't been discovered yet so who knows. I think it may have been caused by a lack of oxygen at birth. It can cause this kind of damage apparently from what I've read. I will definitely look into all of these tips - thank you so much everyone!