Dear Mr. Aporzeca and other members of this site,
I'm so happy to be recommended to this site by the respectable Dr. Druey. I'm mother of a 13-year-old boy who is diagnosed of SCLS recently in Hanoi, Vietnam.
He got the first attack on Jan.12, 2018 and fortunately the ICU doctor suspect SCLS and saved him with appropriate treatment. He got 32 bottles of Kedrigamma based on dose of 2g/kg by that time. According to my son's doctor, he need monthly infusion of IVIG for prevention, which costs us about $5,000 /month. By now, my son has already got 3 times of infusion including the first attack.
I will actually share detailed information about my son soon. But what I'm now so worrying is the roadmap of his preventive treatment.
Our problem is that the government insurance here refuse to pay for IVIG from the second time because there's no indication of SCLS in the instruction and also private insurance company does not pay due to it is preventive treatment only.
We are now so embarrassed and shocked for this as the cost is too big to us, let alone it will be life-long prevention as the doctor says.
Could you all please tell me whether you got payment for your monthly IVIG insurance? Does it come from your government insurance system or private insurance company? If yes, could you tell me which insurance package you bought and how the detailed procedure is, the name of insurance company, your experience with it, etc.
I would be so grateful to all of you for your information and support.
With best regards,
Nhan Nguyen
Hanoi, Vietnam
Hi Nhan Nguyen,
I live in Germany and I am in the semi-state run health insurance system. They pay for the IVIG monthly. Basically there is the same problem that there is no regular indication of SCLS with the IVIG. So my doctors apllied for a so called Off-label use. The requirements for that were/are very high: Deadly or very severe illness, no other equal treatment available, good chance for help with the IVIG. As SCLS and IVIG fulfill the requirements, they pay.
I am in contact with Germans that are insured in private companies. It is basically the same.
Perhaps that could help you, although our countries and insurances differ widely.
As far as you know a treatment with terbutalin and theophylline would be better than nothing, could ba a fall-back.
I wish you and your son the very best.
Andreas
Dear Nhan,
Welcome to our Community! You are our first member from Vietnam.
So yes, the good news is that IVIG is an excellent preventive therapy for SCLS, including in children, but the bad news is that IVIG is very expensive to produce (from blood donations), and because SCLS is a fairly newly diagnosed illness, patients, caregivers and medical doctors must obtain IVIG for SCLS on a case-by-case, exceptional basis from their private or government-run insurance programs. This is true even in the United States, where I live.
I have just sent you several, recent scientific articles on IVIG for SCLS, including for children, which you can use to show to your doctors and insurance company that IVIG for SCLS is no longer an experimental treatment but, rather, the most recommended and effective treatment available.
I have some suggestions. First, your government insurance plan must have some appeal process, so you should appeal every denial. In case you haven't done this already, you should get the ICU doctor who treated and diagnosed your son to write a letter on hospital stationery supporting your appeal and your son's treatment plan. Second, you should submit the articles I have just sent you to the government insurance company. Third, you should make an appointment with Dr. Vu Chi Dung, head of the department of endocrinology, medical genetics and metabolism in Hanoi's National Hospital of Pediatrics (18/879 La Thành, Láng Thượng, Đống Đa) because he is your country's leader in terms of rare diseases, especially in children. If he agrees with your son's diagnosis, and he reads the scientific articles I have sent you, I am sure that he too will write a letter -- or do more than that -- to support your appeal. Another person to speak with there is Tran Minh Dien, deputy director of the NHP. I read that the NHP even has a patient support group called (in English) the Rare Disease Patient Club, so you should join it to find out what others have done to obtain treatment for their illnesses.
Trust me, many of us -- including me -- have had to work very hard to get our treatments, so we understand your situation even though we don't live in Vietnam. Your son is actually very lucky to live in Hanoi, and not in other cities -- never mind in rural areas -- of Vietnam.
Let us know what happens,
Arturo
Dear Arturo,
You are true to say that my son is lucky to live in Hanoi. We almost lost him in the first night if the doctor did not suspect and study about SCSL all that night to find a way to save him.
For your first suggestion, I will try again. The ICU doctor actually can not do other based on the insurance regulation here. Because he said that it is not 1 or 2 time infusion, it is pro-long preventive treatment, and there's no precedent case before, and the IVIG indication is used for 5 specific diseases only. If he approves for us from the second time, he may be accused of seeking profit from insurance and it's not good for his career. We understand about that and haven't thought of the appeal!
Our government insurance is very complicated, it may take time and lots of procedure to approve a new/existing medicine for a new discovered disease. Anyway, I will try and ask the ICU doctor who has already been studying and knowing about the article you sent me.
What I am hoping now is your third suggestion. Do you have any relation with Dr. Vu Chi Dung or just happen to know about him via website? It would be good for us if there is some recommendations when meeting him. I know it's not easy but I will try my ulmost.
I will also find the Club that you suggested.
We are grateful to everything you provide and will keep you updated about our information
Wishing you all the best.
Nhan Nguyen
P/S: Below is summary of my son's case:
Systemic Capillary Leak Syndrome (Clarkson disease):a very first case in Vietnam and there are less than 200 cases in the world.
As this syndrome is rare but fatal and can occur again, the prevention treatment is required to reduce the frequency and severity of attack.
Hi Andreas,
Thank you for your reply. What you say: "the requirements for that were/are very high: Deadly or very severe illness, no other equal treatment available, good chance for help with the IVIG. As SCLS and IVIG fulfill the requirements, they pay" made me understand that they will pay in case of severity or new attack. Is that right? If yes, it's the same in Vietnam.
However, my son is at normal health status now, and everybody too, may be, when receiving preventive treatment. So how can they consider it severe? What you have to do for off-label use each time? Could you please clarify it?
And what is the private insurance company that you may know which already cover this disease. Pls. give me the name so that I can check if they have network in Vietnam. I heard that there are some companies who pay for pre-existing disease, but very high fee :(
Sorry to bother you but I treasure every information now.
Best wishes,
Nhan Nguyen
Nhan,
To your question, no, I realize that personal introductions make things easier -- even in the United States -- but no, I don't personally know Dr. Vu Chi Dung; I did a search online under "rare disease" and "Vietnam" and I saw these relevant articles:
http://vietnamnews.vn/society/282956/treatment-of-rare-diseases-in-vn-is-expensive.html#YYeKruvkLh95S48B.97
http://genzymerarecommunity.com/blog/first-national-rare-disease-patient-club-launched-vietnam
http://english.vietnamnet.vn/fms/science-it/196790/doctors-quietly-fight-rare-diseases.html
In my experience, when dealing with rare diseases, it is much better to have the name of one compassionate and knowledgeable person (like Dr Dung) than to try to find such a qualified person without some kind of a logical method.
As concerns private insurance, no such company will sell you a policy when your son has a pre-existing condition -- never mind one requiring such an expensive treatment -- because they will obviously lose a lot of money doing so. Therefore, unless you already have such a private insurance policy, you must work with the government insurance authorities -- which is why you need someone knowledgeable like Dr Dong on your side.
Dear Arturo and Andreas,
Thank you very much for all of your information and dedication. I will start working on it and keep you updated.
With best regards,
Nhan Nguyen
Nhan,
The insurance company pays for the monthly infusions. The diagnosis „SCLS“ itself is considered as severe illness and fulfills the mentioned requirements.
Regarding the private companies I agree with Arturo. And they definitely operate only in Germany. Even if a company with the same name operated in another country, they would have different conditions.
Good luck.
Andreas
Dear Arturo and others,
I'm going to take my son to hospital tomorrow for next IVIG infusion. The previous times was 7/3; 27/4 (one month and 20 days) and tomorrow 7/6 (1 month and 10 days). I did actually want to lengthen the time to see how my son's health react. He seems to be normal whether we take him to the hospital or not. I also wish to check his blood test before infusion so see the igg level go down or not. But his doctor says whatever the result is, the infusion is a must, so no need to test!
It seems that test is test only, you still need the monthly required infusion, even when your igg level is still high, right?
My son's doctor has recently contacted Dr. Druey and received his confirm regarding his diagnosis. It's really hard to accept this truth. We are going to participate in Dr. Druey's research project where we are recommended to send blood sample of all our family including my son, parents and his younger brother. Has anybody been the same?
In the meantime, our friends and relatives, who may not understand about this rare disease, suggest us why not stop it, why let our son depend on the medicine, and he is at adolescence age, he will outgrow it!! If one is over 25 years of age, so one may have to accept life-long treatment like that. Now your son is only 13 and he looks completely ok,….
Regarding the insurance, we are now still paying by ourselves and do not know how long we can continue, maybe 1 or 2 years after selling all our assets. While our son's life is ahead. We already talked with our doctor and ask for his help in raising voice when the annual insurance review comes. He said he would but not sure it works. Dr. Druey sugggested Sub Q igg which is cheaper.
It's so ironically that many other rare diseases in Vietnam do not have medicine, they have to order from oversea or some are sponsored by the manufacturer. But IVIG is available there, in our hospital, without payment except in serious shock case.
We are still in the middle of nowhere and do not know how our future will be. Hope everybody the best!
Nhan Nguyen
Dear, I hope that the google translator reflects my comments well, ... I deeply regret that not only have to deal with the horror of this disease but have to be fighting for a medication that empirically, at least, shows that it is by far the best treatment. I do not think he has any other option but to fight with all his strength to convince those who correspond to pay for the treatment. I would like to tell you that everything will fit into your child's body as their relatives think, but I do not believe in that theory at all. Nor do I believe that the solution is to go bankrupt, ... if I think you must have the necessary strength to hit every last door that exists that gives you the slightest possibility. I should be dead, my diagnosis was after repeated attacks, and the last one in mid-2017 had already advanced more than necessary and became technically unstoppable; but the doctors did not give up even when all the forecasts indicated that any effort would be in vain, ... and they pushed me forward. That, ... the determination of my doctors to fight and not surrender beyond the possibilities that we all know will most likely be scarce. Our greeting from Argentina. Ariel Battaglia