• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Getting insurance to see Dr. Kaufman(from Italy)?

Messages
87
(apologies if this is not the right section of the forum, feel free to move it)

I have gotten to the point where i have almost complete paralysis of will and it is very hard for me to generate thoughts, the cognitive symptoms i have are absolutely insane. I suspect inflammation of the brain is the cause but it is completely impossible to get a decent infectious panel where i live, no doctor will do it and even if they find something they won't give me treatment for it because they don't know me/cfs exists so they just say "well it's a normal viral reactivation". The doctors that do know about me/cfs are completely useless, they dont prescribe any exams and don't even diagnose you or give you treatment. The situation here is very dire unfortunately.

I could try immunosuppressants but if the neuroinflammation is due to infection i end up ruining myself even further(especially considering i have hypogammaglobulinemia). It's a 50/50 that i don't wanna take (though i might take it at some point from desperation).

My last hope is to see Dr. Kaufman(i know he is very good) but i don't have tens of thousands of dollars to pay for the exams he prescribes. There might be a way for me to get health insurance once i'm in the US since i know there are supposed to be some benefits for people below 26 years of age (i'm 22), maybe i could attend a community college or something(to get further benefits)? I assume that i will need a really good insurance to pay for the kind of tests that Kaufman prescribes but maybe due to my young age it is doable without spending too much. I just need the diagnostics, after that i can come back to Italy and get the treatment he prescribes here (paid for by the state).

My cognitive impairment totally prevents me from doing proper research about this. Can someone living in the US help me figure this out? If it turns out to be viable i would owe my life to you...

Thanks for reading
 

maybe some day

Senior Member
Messages
775
Location
West coast
Folks in the US that dont have health insurance through work can apply for the affordable care act. But there are high deductables, several thousand dollars. Its not as easy as it seems though coming from another country. Enrollment is closed for 2019, but you can have a look here for more info https://www.healthcare.gov/immigrants/immigration-status/

Another big player are HMO type insurances. They keep costs down (if you can call it that), but Drs must be in network or your not covered. Monthly premiums can be 500$ a month for one person.

You may want to contact Kaufman as well to see if he accepts insurance, and the length of his waiting list

To sum things up, unless one is working full time as an employee to attain benefits, the options for health care are extremely expensive
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
no doctor will do it and even if they find something they won't give me treatment for it because they don't know me/cfs exists so they just say "well it's a normal viral reactivation".

@Hubris Have you tried going to a doctor in Italy but NOT telling them that you suspect ME/CFS (or any specific diagnosis) but just tell them that you have been very ill and believe you have viral re-activation? I am wondering if they would be able to run PCR tests on viruses such as EBV, CMV, VZV, HHV-6, Parvo, etc, to see if you have active viremia and if so, this might be a way to get an anti-viral prescribed.

I could try immunosuppressants but if the neuroinflammation is due to infection i end up ruining myself even further

I agree and if you have active viral or bacterial infections, you would not want to suppress your immune system vs. if you have autoimmunity. It could be very dangerous like you said.

My last hope is to see Dr. Kaufman(i know he is very good) but i don't have tens of thousands of dollars to pay for the exams he prescribes.

He is my doctor since 2014 and is amazing. With US health insurance, I have only paid for the office visits and phone calls (which are not covered) but all of my blood tests, medications, treatments, etc, have been covered (with co-pays of course). I know that he has many international patients from all over the world but I am not sure how they pay for testing and treatment (which would be cost prohibitive without insurance).

There might be a way for me to get health insurance once i'm in the US since i know there are supposed to be some benefits for people below 26 years of age (i'm 22), maybe i could attend a community college or something(to get further benefits)?

I don't know a lot about this but had thought that the benefits for those under age 26 were for US citizens (as a way for them to remain on their parents health insurance through age 26 if they did not have their own). Although you are correct that college students can often get health insurance through their school. I am not sure though how this works if you are an overseas student/ non-US Citizen.

I just need the diagnostics, after that i can come back to Italy and get the treatment he prescribes here (paid for by the state)

I have heard many stories of people who saw a US doctor (not just Dr. K but in general) but then were not able to get the prescribed treatment (even something as simple as an anti-viral or antibiotics) back in their home country. But then I have heard of others who had a doctor in their home country and were able to coordinate care with the US doctor.

My cognitive impairment totally prevents me from doing proper research about this. Can someone living in the US help me figure this out? If it turns out to be viable i would owe my life to you...

I wish I knew more and would be happy to help you if I knew what else to do! Maybe one of Dr. K's international patients who is not a US citizen will read this and reply (and they would know much more about this than I do).

But there are high deductables, several thousand dollars. Its not as easy as it seems though coming from another country. Enrollment is closed for 2019, but you can have a look here for more info https://www.healthcare.gov/immigrants/immigration-status/

I had insurance though the ACA (affordable care act) for 4+ years and it was extremely expensive. By the final (4th) year that I had this plan, it was over $900/mo just for myself. It was insane but I was in the middle of two treatments, and the treatments were being covered, so I had to keep paying the premiums. I now have a different insurance.

I had thought the ACA was only for US citizens but now that I think about it, I actually am not sure and this is worth pursuing. Our current govt is trying to get rid of this entire program but so far (thank God!) they have not succeeded and millions of people would have no health care without it.

You may want to contact Kaufman as well to see if he accepts insurance, and the length of his waiting list

I think this is an excellent idea. I believe the waiting list is very long for new patients (but he has a colleague in the same office, Dr. Chheda who is taking patients sooner). Maybe you can find out how long the wait list is as a starting point and then inquire how it works for international patients.
 

MEPatient345

Guest
Messages
479
after that i can come back to Italy and get the treatment he prescribes here (paid for by the state).
I have US citizenship and bounced back and forth between US and Europe for first few years. You can’t use a US prescription in Europe, and sometimes EU doctors won’t prescribe off label drugs, or they are not covered by the state or private insurance here. Many European doctors would consider what Kauffman prescribes as out of the question — they are not standard treatments for us, and European doctors are much less willing to be experimental.

Even in the US, patients must fight with insurers for drugs like what Dr K prescribes. So, if you jumped through all the hoops to get on US insurance, they still could decline to cover some tests or treatments.

Also you must consider how long you can stay in the US on a visitors visa to get testing done, and the cost of accommodation in the Bay Area. I have held off on going there bc I don’t personally want to try any of the medications he offers. There was one thread by @ivorin where he was visiting Dr. K from Croatia. I had been interested to see how he got on, but I think he has not been active / posting about it.
 
Last edited:

perrier

Senior Member
Messages
1,254
I have US citizenship and bounced back and forth between US and Europe for first few years. You can’t use a US prescription in Europe, and sometimes EU doctors won’t prescribe off label drugs, or they are not covered by the state or private insurance here. Many European doctors would consider what Kauffman prescribes as out of the question — they are not standard treatments for us, and European doctors are much less willing to be experimental.

Even in the US, patients must fight with insurers for drugs like what Dr K prescribes. So, if you jumped through all the hoops to get on US insurance, they still could decline to cover some tests or treatments.

Also you must consider how long you can stay in the US on a visitors visa to get testing done, and the cost of accommodation in the Bay Area. I have held off on going there bc I don’t personally want to try any of the medications he offers. There was one thread by @ivorin where he was visiting Dr. K from Croatia. I had been interested to see how he got on, but I think he has not been active / posting about it.
Hello Silencio
Would you be able to list some of the meds which are used? I am really interested in knowing. Thank you
 

MEPatient345

Guest
Messages
479
Would you be able to list some of the meds which are used? I am really interested in knowing. Thank you
Hi, I’m not a patient of Kaufman’s, but the meds I was referring to are low dose LDN (tried already, is accessible in Europe), rituximab and IVIG, both of which I believe he uses in some cases and would be difficult/ impossible to access in most of Europe as an ME patient.

He also apparently uses rifampin, equilibrant and HBOT all of which I have tried while in Europe with no benefit.
This is all discussed in this thread by patients of his: https://forums.phoenixrising.me/ind...-on-long-term-outcomes-with-dr-kaufman.55707/

And he is one of the main doctors who is referring patients for MRIs to check for CCI and Chiari, if you search the site you will find threads. That is also possible to look into without traveling to US.
 
Last edited:
Messages
87
@Hubris Have you tried going to a doctor in Italy but NOT telling them that you suspect ME/CFS (or any specific diagnosis) but just tell them that you have been very ill and believe you have viral re-activation? I am wondering if they would be able to run PCR tests on viruses such as EBV, CMV, VZV, HHV-6, Parvo, etc, to see if you have active viremia and if so, this might be a way to get an anti-viral prescribed.

That's what i do every time, i never mention ME/CFS. The thing is, they don't prescribe antivirals or do PCR because "it's just a normal viral reactivation, everyone has it from time to time".

I agree and if you have active viral or bacterial infections, you would not want to suppress your immune system vs. if you have autoimmunity. It could be very dangerous like you said.
Indeed, but at some point i'll throw the coin from desperation, i can't keep going like this i keep getting worse


I have heard many stories of people who saw a US doctor (not just Dr. K but in general) but then were not able to get the prescribed treatment (even something as simple as an anti-viral or antibiotics) back in their home country. But then I have heard of others who had a doctor in their home country and were able to coordinate care with the US doctor.

This is the least of my problems, believe me. It might seem counterintuitive based on what i said so far but i understand the mechanics here and i'll be able to get them one way or another. The much bigger hurdle is actually being able to see dr. Kaufman and doing the tests he prescribes there.

You may want to contact Kaufman as well to see if he accepts insurance, and the length of his waiting list

I'm not sure how relevant it is if he accepts insurance or not; i can pay the visits i just don't have enough to pay prohibitive amounts for the tests. At that point the question would be if the insurance accepts to pay for the tests he prescribes, no?

I don't know a lot about this but had thought that the benefits for those under age 26 were for US citizens (as a way for them to remain on their parents health insurance through age 26 if they did not have their own). Although you are correct that college students can often get health insurance through their school. I am not sure though how this works if you are an overseas student/ non-US Citizen.

I had insurance though the ACA (affordable care act) for 4+ years and it was extremely expensive. By the final (4th) year that I had this plan, it was over $900/mo just for myself. It was insane but I was in the middle of two treatments, and the treatments were being covered, so I had to keep paying the premiums. I now have a different insurance.

I had thought the ACA was only for US citizens but now that I think about it, I actually am not sure and this is worth pursuing. Our current govt is trying to get rid of this entire program but so far (thank God!) they have not succeeded and millions of people would have no health care without it.
There might be a way but these things are far too hard for me to understand, i'm already struggling a massive amount to reply to these posts... i wish there was someone who was an expert with these things and could help me out?

I think this is an excellent idea. I believe the waiting list is very long for new patients (but he has a colleague in the same office, Dr. Chheda who is taking patients sooner). Maybe you can find out how long the wait list is as a starting point and then inquire how it works for international patients.
.
I mean sure, why not. Where should i email them?
 

Belbyr

Senior Member
Messages
602
Location
Memphis
Would you be better off finding a doctor where you are that could contact Dr K and find out what kind of testing he does, instead?
 

Gingergrrl

Senior Member
Messages
16,171
Even in the US, patients must fight with insurers for drugs like what Dr K prescribes. So, if you jumped through all the hoops to get on US insurance, they still could decline to cover some tests or treatments.

This is very true and having US insurance is no guarantee that the insurance will cover what the doctor is prescribing (even on something very basic let alone complex or expensive).

Also you must consider how long you can stay in the US on a visitors visa to get testing done, and the cost of accommodation in the Bay Area. I have held off on going there bc I don’t personally want to try any of the medications he offers. There was one thread by @ivorin where he was visiting Dr. K from Croatia. I had been interested to see how he got on, but I think he has not been active / posting about it.

This is also a good point and housing is extremely expensive in Silicon Valley & the Bay Area. I live about 7 hours south and when I had office appts w/Dr. K we would drive up and stay at a local hotel for 2-3 nights. We usually stayed about 30 min away where the hotels were a little cheaper. But long-term, this would be too expensive to sustain. I was also very curious what happened with Ivorin but he stopped posting on PR.

Hi, I’m not a patient of Kaufman’s, but the meds I was referring to are low dose LDN (tried already, is accessible in Europe), rituximab and IVIG, both of which I believe he uses in some cases and would be difficult/ impossible to access in most of Europe as an ME patient.

He prescribes what he feels is appropriate in each individual case following gathering a detailed history, testing, follow-up appts, etc. It is the opposite of a one-size fits all approach (although there is some standard testing that would be run on every patient to rule things in or out). I know many of his patients (on and off this board) and each person has a different treatment plan. He treats immune deficiency and chronic viral re-activation, Lyme & tick borne diseases, SIBO, MCAS, POTS and Dysautonomia, EDS, CCI, Autoimmunity (from various causes), etc, in addition to ME/CFS. Basically, he treats complex individual situations.

That's what i do every time, i never mention ME/CFS. The thing is, they don't prescribe antivirals or do PCR because "it's just a normal viral reactivation, everyone has it from time to time".

That is so frustrating b/c how could they possibly know without adequate testing :bang-head:... but I understand that this is the very reason that you want to see a doctor who will provide that.

This is the least of my problems, believe me. It might seem counterintuitive based on what i said so far but i understand the mechanics here and i'll be able to get them one way or another. The much bigger hurdle is actually being able to see dr. Kaufman and doing the tests he prescribes there.

In that case, if you are certain that you will be able to get the treatments in your home country, I definitely think it is worth getting the testing (if you are able to arrange it).

I'm not sure how relevant it is if he accepts insurance or not; i can pay the visits i just don't have enough to pay prohibitive amounts for the tests. At that point the question would be if the insurance accepts to pay for the tests he prescribes, no?

Testing and treatment would be cost prohibitive without insurance but the office visit and follow-up visits and/or phone calls would be do-able. I don't think there is any way to know if your insurance would pay for anything until you get to that point.

I mean sure, why not. Where should i email them?

I will send you a PM with their contact info.


I did not read the link but this is what I suspected (that you must be a legal immigrant to apply for an ACA plan).

Would you be better off finding a doctor where you are that could contact Dr K and find out what kind of testing he does, instead?

This is also a good idea and I know he does consults with other doctors re: his patients. I would assume if another doctor contacted him for a consult of a potential patient that he would do this.
 

MEPatient345

Guest
Messages
479
I did not read the link but this is what I suspected (that you must be a legal immigrant to apply for an ACA plan).
Yes, and I think that a student visa is not considered to be an immigrant visa, since it is temporary.
https://www.uscis.gov/working-united-states/students-and-exchange-visitors
So, i don’t think there is a way for @Hubris to get US insurance in the US. Insurance and immigration matters in the US are complex and favor the healthy / wealthy who can work or invest.

Perhaps getting travel health insurance through a global brokerage would work. But I have that myself for where I currently live and they have restrictions on what they cover and are v expensive.
 
Messages
87
Would you be better off finding a doctor where you are that could contact Dr K and find out what kind of testing he does, instead?
There is no such doctor here that will do that unfortunately

@Gingergrrl @Silencio

Well, all of this is very confusing. I sent them a mail, let's see what they reply with first, maybe they can help me. If not, then maybe i can take a month to read everything 30 times over and maybe eventually i'll have learned it :)

edit:
We are a private pay facility so we do not accept any insurance. Generally, overseas patients pay all out of pocket.

well...
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
edit:
We are a private pay facility so we do not accept any insurance. Generally, overseas patients pay all out of pocket.

This is true for all of their patients (including US citizens with insurance). The office visits and phone calls are all private pay but with the testing, treatments, medications, etc, are covered by insurance (with co-pays and often having to get Prior Authorizations). I am still curious how overseas patients pay for the blood work, testing, etc, and if that is ever covered by any kind of international insurance? I don't actually know the answer. I wish I had better feedback @Hubris and wish you the best.