At age of 41, on March 2021 I got dx with psa 189 and bone mets in skeletal system, after brutal fight throughout 2021 with orchitectomy, 10 chemo and abiraterone since 6th chemo, I am at 0.017 now, but I know fight has just started.
I have provision that my company provide work location to US and if US govt visa system allows I wish one day I can get treated by doctors specialising in PCA.
Now I am looking for a great help from this forum which might help me to turn the tide
1. References of doctors and/or institutes that you feel lucky to be with
2. My insurance will be from united medical insurance - what kind of coverage they will provide
3. From various videos (especially the ones from dr Mark Scholz) I have a notion that immunotherapy in lower psa stage might help to prolong life.
4. At what condition insurance covers this immunotherapy treatments.
I know I am asking a lot, but believe me I have no other option but to ask hand from my fellow fighters who understand these all and care for the state of mind.
With best regards
Soumen
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Soumen79
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Soumen, I'm sorry I cant help with your questions but I think you are right to opt for US over UK - there are very few options available here. Very best of luck to you.
Sadly I have to agree with you with US over UK. I've said before that my husband's care hasn't been great here in the UK and that hasn't improved!! Last Monday we had an appt to meet his oncologist for the first time despite being diagnosed 2 yrs ago. 1/2 way through our 90mins-2 HR journey we got a phone call cancelling the appt as apparently the oncologist wasn't in the hospital!! We didn't get phone call till after 10am, surely they knew before that time that the oncologist wasn't going to be there!!
Sorry to hear that you got the run around . I too resemble that remark.I delayed treatment to get a second opinion from the radiology dept in the Spanish health care system . When the day arrived it was with a team of urologists who presented me with the option of robotic surgery. I just might do the treatment that iis most readily availble which is radiation +ADT. At this point something is better than nothing although i doubts aboutd that . I just turned 67. I f someone reads my profile and worked there way through similar circumstances i would love to hear it.
He could have been held up at an emergency operation- that has happened to me at a few appointments at a University hospital here. Most of the patients were in the waiting room at this stage so we all had to wait the 3 hours until the operation was over and he could travel from the other hospital the other side of the city.
Yep, she could have been held up but I would have thought they'd have been aware she wasn't going to be doing her morning appts well before they phoned, my husband's appt was at 11.30, the lady who rang was so sorry as she knew we were traveling such a long distance. The hospital isn't in a large city just a very small town but she does only work from the one hospital & we were told she wasn't in the hospital. We know these things happen, my point was more a case of this would have been my husband's meeting with her since diagnosis 2 years ago (every appt has been over the phone & very difficult to understand) we have so many things we want/need to talk about! We asked if we could see someone else and was told no, usually you get to see a member of the team if this happens under the cardiology dept.
Interesting you would say that. Our noted Academy Award winning documentary filmmaker Michael Moore says that your system is better than the US because it's free. And that is certainly a factor.
I agree with him in many ways and there are indeed very many brilliant things about the NHS and brilliant people working within it but sadly it is on its knees at the moment
The NHS isn't free, it's only free at point of use. UK residents pay national insurance for the total of their working life and this helps fund the NHS. But Nickjoy is right, Unfortunately it is on its knees at the moment and there is a massive disparity of care under the different health regions.
The US medical system and health outcomes rank well down on comparison to developed countries around the world and even some undeveloped countries.
The UK system as an example provides better medical outcomes to their poorest citizens than the US does to its best off citizens. This is primarily due to preventive health measures to keep you healthy vs in the US to try to fix you once your unhealthy which is more profitable.
Health care and Medical treatment is not considered a right or universally provided. It is provided through medical insurance which you have to pay for. So many people do not have medical coverage or coverage they can afford. Or afford to use if they have it. Medical insurance varies greatly in its quality, what it covers, afforability, and where you can use it. Coverage and payment features reset every year on January 1st. So completing coverage within a calendar year is often a priority to reduce your deductible and out of pocket costs. There is a whole crazy system with rules that are crazy and will seem crazy to people from countries with universal coverage.
Doctor, Hospital, and medical care vary greatly depending on where you live and receive your care.
So you like us are at this point are very sick with cancer whether we feel symtoms or not.
In the US, PPO plans allow you to be treated by doctors and hospitals around the country.
The US medical system employs the use of insurance companies. These companies add no value to your medical care and double the cost of health care insurance. They determine where you can get care, if you can get care or what care your plan will cover, how much you have to pay for it. They are in the business to make money not provide care. Actually they provide no care, and often deny your access to payment of a coverage or a drug or procedures. You will learn that fighting with your health insurance company comes with the territory.
So the FDA is a US government agency that approves what procedures or drugs are considered valid and approved for various types of malodies, and specific stages of diease care. Its rulings play a large part in whether the treatment can be offered in the US and whether government or insurance companies will pay for treatment. Even if approved insurance companies aren't forced to cover a treatment or drug.
Clinical Trials are used to prove a procedure or drug is effective under very specific conditions..
For cutting edge things like immunotherapy, clinical trials may be how and possibly the only way you can receive such treatment. Requirements for participating are specific and strick, costs can often fall on you, and locations of these trials can be a limiting effect on who can or does participate in them.
So unless you are willing and able to pay cash, your care become part of this complicated, inefficient, and often unfair system.
So now you know what your getting into by entering the US healthcare system, and it can take years to get a handle on it, and you will experience ups and downs thoughout your care.
It takes some research to determine what doctors or hospitals are better than others for specific care. You came to the right place to get opinions from actual patients and advocates on this site.
You will also find many in the US travel overseas to many different countries for care not available here, covered by your particular insurance plan, or that is unaffordable in the US.
I see your from India. A number of patients here have traveled to India for PSMA scans and PSMA LU-177 therapy.
So some of the care may also be close to you in India.
Good luck to you, I hate to see you've been struck with this at such a young age.
Sorry to hear your opinions/experiences. Been diagnosed and treated in USA for PCasince 2004. Never experienced what you discuss. Went to Germany in 2016 for HIFU treatment…….either bad luck or incompetent docs……..in hospital for 3 months after return from Germany because of poorly administered epidural, leading to a infection and laminectomy of L-1 to L-4.
The USA might not be ok for an America hater like Michael Moore but it works for me. Still around, feeling great, and getting Lu-177 treatment at Mayo 3 weeks from tomorrow.
Tell me about Your LU-177 treatment, Since it so new in the US I've been trying to find someone in the US that has received it or is receiving it. Is this outside a trial? Do you know the cost per infussion at Mayo?
I took a quick look through the Novartis site, which I've seen most of before. Didn't see any price info.
So we've known that Novartis priced their drug at $42,500 for a single infusion, the cost they sell to hospital / clinic. What I'm asking if we know what does the hospital (MAYO) then charge. Do they mark it up by doubling the price they sell to you and then add on doctor, nurse, room, equipment etc.
Medicare may pay, but has any insurance come forward to pay for it.
So you can go to India , fly to/from US, stay in top hotel, be picked up by hospital, receive LU-177 and all your travel costs for under $10,000. Actual US patients have reported.
In the US it might be approaching $100,000 for a single treatment. This is what I'm trying to find out is it $60,000 or up to the sky is the limit?
Since the clinical trial went up to 6 infusions, the FDA approved up to 6 infusions.
Not sure what you are asking about. You state that an American(I suppose?)can fly to India round trip, get the Lu-177 treatment, stay at top hotel, etc. for under $10,000. complete. You go on to say it could cost up to $100,000. for the same treatment in America if you have no insurance.While I know of only a few Americans who have had the Lu-177 treatment, I have never heard of anyone paying over $30,000. Besides, probably over 90% of treated Americans have some form of Medicare and/or private insurance to pay for most of the expenses. FDA approval will lower the patients costs significantly.
So if it so much cheaper in India, why would you consider coming to the USA if you are not a citizen with insurance?
The individual who originally posted is from India. He has some choices at home I was pointing out.
I explained to him how things work in the US with healthcare, insurance etc. He should know what to expect. He may not have the right expectations.
My BCBS has denied me twice on Pet Scans both went to appeal, in one case they slowed me from getting the scan well over a year with appeals. They have denied me on cough suppressant, and on acid reflux meds both ordered by physicians.
Some are outright denials others are known as "denial by appeal", they slow you down so you'll give up. At the worst for them they put you off and they save money on the procedure that year. For the patient denying a needed Pet scan is cruel, maddening and dealing with the Insurance company can at times feel worse than the disease.
They also hire a secondary company to deny you on expensive PET scans and I'd assume LU-177. You can't contact them they are a shadow company. So your insurance company points to them and says it was them not us.
FDA has approved LU-177 in the US for certain PC patient statuses. The drug company sets the prices for their drugs not the FDA. The hospitals / clinics set their own prices for the treatments not the FDA.
Insurance companies make contracts with hospitals/clinics and both determine what the Insurance companies will pay individual hospitals/ clinics for performing a procedure on a policy holder. These payments are much less than "List Price".
I go to several hospitals in several states, the one closest to my primary house is by far the most expensive. My insurance broker explained that happens because that hospital wants to be paid more, so the Insurance company sets premiums higher for them to compensate for paying them more. The patient pays higher premiums to support the whole arrangement.
In Europe, Australia, India prices for care is dramatically less than in the US. Free at point of use in most developed countries. Some countries pay you some form of money let's call it a salary once diagonsis is made. In the US it's difficult to get Medicare if your not 65 or SSDI. I've been declined for both.
I have known of patients through this site who have gone abroad, and patients in other countries that received LU 177.
You are the first I've heard of getting it in the US NOT on a clinical trial.
Sounds like your getting it on Medicare, I'd still like to know what Medicare pays for a single infussion.
I'd like to know what a patient pays for this treatment using health insurance like BCBS as a in network hospital. And if anyone has actually had private insurance actually pay for it.
In other words it's been FDA approved, when will that first private insurance patient actually be able to get it. Who's the Insurance, and what was the List price and what was the actual price for insurance.
Looking at the answers here Soumen - it seems like no system is at all perfect. I wish you the very best of luck with your decision process. If you decide on the UK, I would position yourself in London and live close to the Royal Marsden (they have two bases I think) that way you are most likely to be sent there for treatment and are close to major trials.
Excellent idea to live near the hospital, living outside the health authority area causes a lot of problems. 4 times my husbands bloods have been sent to the local hospital for testing with an accompanying form that has the oncologists name and hospital on it. Each time the results have gone missing! According to the oncologists secretary this happens a lot when you live outside the area.
TJGuy wrote --- " ... For cutting edge things like immunotherapy, clinical trials may be how and possibly the only way you can receive such treatment. Requirements for participating are specific and strick, costs can often fall on you, and locations of these trials can be a limiting effect on who can or does participate in them ... "
Just suggesting that *for cutting edge* as in immunotherapy, clinical trials are not necessarily the ONLY WAY. My Dr. used his own Proprietary IMMUNOTHERAPY DRUG combination injection back in 2015 for my GL10 and has been improving/expanding upon the early beginnings since.
Are you aware of Fortis Hospital in New Delhi. LU-177 has been administered there for a number of years. Long before recent approval in the U.S>
Dr. Ishita Sen is the Director and Head of the Department of Nuclear Medicine & Molecular Imaging at Fortis Memorial Research Institute (FMRI) in Gurgaon.
If you would like more information on LU-177 therapy in New Delhi, contact patient advocate Manav Sadhwani at info@nuclearmedicinetherapy.in
Well, I am aware of this, in fact lu-177 is administered in my home city kolkata as well. India has most of the drugs, but I still didn't find doctor who specialises in PCA, here immunotherapy is almost prohibitory not only because of cost but also because of lack of setting and experience. Also BAT therapy is not much practiced
One day I need to travel the path between hormone sensitive and hormone resistance, my hope that when I pass that path I will be in the hand of PCA specialised doctor so that combination and sequencing of drugs may have more value in terms of life-time.
Thats why I also also requested for the doctors people in this forum admire.
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