Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hi all,
I have not been on in a while. Life has been crazy. We learned in late May that my dh would be going on a 2-3 years assignment in Bangalore. Everything is coming along however, they do not have the same brands of IVIG in India as they do here in the states. I am currently on Gammagard S/D low IgA. The insurance company would like for me to get the medicine from a local pharmacy however I am torn. Would it be better to try a new local product, with local antibodies or to insist they ship my current product to India. I did have severe reactions to Privigen when i took it origianlly, however they were also infusing it at way too high of a rate so I am unsure if it is the IgA in the product that caused my problem or something else. I am leaving Wednesday to go on a house hunting trip to Bangalore and I have an appointment with a doctor at the best hospital in town. I then have a appointment with my current immunologist a few days after we return. My current dr. will make the recommendation to the insurance as to what he feels is the best course of action and the insurance company will ship the meds to India if it is medically necessary.
Has anyone else received treatment in a different country?
Are we insane for accepting this assignment?
I have not been on in a while. Life has been crazy. We learned in late May that my dh would be going on a 2-3 years assignment in Bangalore. Everything is coming along however, they do not have the same brands of IVIG in India as they do here in the states. I am currently on Gammagard S/D low IgA. The insurance company would like for me to get the medicine from a local pharmacy however I am torn. Would it be better to try a new local product, with local antibodies or to insist they ship my current product to India. I did have severe reactions to Privigen when i took it origianlly, however they were also infusing it at way too high of a rate so I am unsure if it is the IgA in the product that caused my problem or something else. I am leaving Wednesday to go on a house hunting trip to Bangalore and I have an appointment with a doctor at the best hospital in town. I then have a appointment with my current immunologist a few days after we return. My current dr. will make the recommendation to the insurance as to what he feels is the best course of action and the insurance company will ship the meds to India if it is medically necessary.
Has anyone else received treatment in a different country?
Are we insane for accepting this assignment?
I feel for you...I have often thought of this subject as I am able to move anywhere in the world with my company. There are so many "what if's".
My one thought is, have you had your immuno contact the consulting immunologist at the IDF? It's a program they have where its like you can get a second opinion, like a doctor to doctor consult. I would think if your doc would do that, along with you trip to the doctor (immuno I hope?) on your house hunting trip, this may help you come to a decision on whats best for you.
Will you be living in an expat community? You must be very excited!!
All that said, were I younger I'd jump at the opportunity.
My daughter is going to spend a semester in Israel starting in June. We are "collecting" Hizentra from friends who have extra so she will be able to take her four month supply with her. I think I'll be able to accumulate enough by then.
As for getting the medicine, there is a way to do it, however, the pharmacy can not dispense it directly to the other country. They send it to a courier service who then brings it to me. They really do not want to do that because it is so expensive, however the company has spared no expense with medical care while on assignment. They cover the entire cost of the policy and there is a maximum out of pocket of $2000/family/year and that covers medical, pharmacy and vision. Dental is a little different.
I have been on a board about India called Indiamike that is a wealth of information. This hospital is HIGHLY recommended by many on the board and it is the only one the International insurance plan has a contract with. I can get care anywhere but the company contracts only with places of very high quality/cleanliness. Many hospitals and doctors offices are not up to USA standards but this one is suppose to be of very high standards.
I am nervous due to the lack of knowledge of anyone in Bangalore on CVID. I checked with the international PIDD group and all the doctors are in Northern India who are listed. Thus the relief when my USA doctor agreed to consult.
@ Mark, All the best to your daughter. Hope she enjoys the trip.
try to find a qualified immunologist through this group rather than a hematologist who treats dang fever patients with Immune globulin.
Indian Patients Society for Primary Immunodeficiency (IPSPI)
Ruby Chawla
PLOT NO. 36, SWARNAPURI,PATIA,C.S.PUR,
BHUBANESWAR(ORISSA)-751075
Tel/Fax: 0674-2726402 (O)
+91 98611 85656 (M)
+91 94370 47888
+91 90404 07188 (M)
rubbychawla@ipspiindia.org
rubbyipspi@rediffmail.com
www.ipspiindia.org
Best of all there is an American trained Immunologist in Bangalore. He appears to be very well trained with excellent US credentials.
He would be my choice to treat me or my kids if were in your situation.
SUJATHA RAMESH MD
Columbia Asia Hospital, Bangalore
Deplomat of the American Board Of Allergy Asthma and Immunology
Fellow Of the American Academy Of Allergy Asthma and Immunology
Associate Professor Of Clinical Pediatrics University Of Buffalo Women And Children's Hospital Of Buffalo
Columbia Asia Hospital, Bangalore
good luck . . enjoy the adventure
Thanks for the very helpful information and the reminder to contact her again.