COST OF TREATMENT

could you please tell me the cost of treatment for thal major yearly.
i read $80,000/-
is this true ? so how do normal people afford this?

The cost of thalassemia treatment in the West is at least this much, if not higher. Without private or public health insurance, it would be almost impossible to afford. The more thorough care in Western countries does cost more, but there are major differences in the cost of chelation depending where you are. Interestingly, the cost of chelation is much lower in poorer nations, which reflects both the perceived ability to pay and the true cost of these drugs. For example, a month supply of Exjade in the US is around $3500 to $5000, while in India, this same dose, but called Asunra and made by Novartis India, will cost $300-400 month. The generic brand made by Cipla in India, desirox costs about $100 per month.

It really has to make one think about the costs of health care and what profits are made from the exploitation of people's perceptions of the value of their own or their children's lives. Is it really fair to charge more for a drug because that drug can save your life? The large pharmaceutical companies do seem to feel that determination on price is very fair.

The cost of care also brings up the extreme importance of reducing the birth rate of thal majors through education, testing and awareness programs. There is no country on earth that can truly afford the costs of care for thalassemia, especially as treatment continues to progress, requiring more (expensive) monitoring and scans and thals are living longer, requiring care for more years. Economically, it only makes sense to have a much more global thalassemia prevention program than we have now. Morally, we have little choice but to take care of the thals who are here now and to try and prevent the continued lack of awareness that leads to more and more thals being born worldwide. The rate in Southeast Asia is staggering, and we are only slowly learning the extent in these poor nations.

it's very sad, i hope the cost of drugs decreases.
i was checking the cost of chelators in pakistan, it was alot cheaper than abroad.
i would appreciate somebody who could give me prices of the chelators for an average child and adult:

1. exjade=asunra=Desirox
2.Deferiprone=kelfer (L1)=ferriprox
3.Deferrioxamine= desferal

i hope every one the best!

Hi,

One box of Asunra costs 1440 rupees,as in 1 box of 100 mg Asunra,we buy 7 boxes so our bill is around 10000 per month,i don't know the price of Desirox,Ferriprox as far as i remember was 3400 for a box of 100 tabs,and i am sorry i don't remember the price of desferal.Umair and Tariq are using it so they might be able to inform you about it.

Love And Prayer,
As-salam o alyi kum ...... i wasn on combination therapy , but to last january ( january 2010) m alone on Ferriprox ... at the time  i was on combination therapy and using Desferal  , i used to buy that from Lahore and its Price was Rs.180 (Rs = Pakistani Rupees) per vial , so 1800 for 10 Vials of 500mg , at the time i was using Desferal ,, at the same time it was also available at price  of  Rs150 and Rs130 = 1300 and 1500 for 10 vials of 500mg  ,, ( i think , this difference was just bcoze of Duty charges ) ....

Ferriprox :
since last 2 years or more its available here at the Rs.3400 for a box (3400 for 100 Tablets = Rs.34 per tablet) ...

you guys are right about the cost of treatment .... its really unbareable not only for the Patients their family but also very difficult to  for many governments of the world to bare the yearly complete cost of treatment of even  1000 thalassemia patients .... ( i wanted to say 100 or 500 thals but then i wrote 1000 to make it more acceptable and to increase the no#. of countires :D thats why i wrote 1000 :D )


Umair

That's not even counting the cost of doctor's visits, transfusions, and other medical procedures done as a result of thalassemia complications.

For those in the West who have good insurance or are on government-funded insurance/aid programs, the cost of such things isn't so terrible, but when you don't... like me...

Without doing regular transfusion therapy (which means I also don't do chelation therapy), my one year's worth of medical care for someone who has Hemoglobin H Disease and not even beta thal major has gone upwards of $20,000 with $20,000 being a VERY conservative estimate.


Doctor's visits are $100 a pop.

Blood draws are $100 a pop if not more depending on what the doctor orders.

ER visits because you have a raging fever on a weekend that needs to go down and NOW are anywhere from $5000 to $10,000.  Mine have been upwards of $10,000 towards the $15,000 range and above because of overnight hospitalization and all the wonderful IV drips and junk - awesome!

Antibiotics to kill bacterial infections that give you fever cost anywhere from $100 to $500 a bottle.  If you're lucky, sometimes a pharmacy can dispense a low level generic for lower, but if you've taken antibiotics a lot, it won't work so you are forced to take stronger medications.

Ultrasounds, X-rays, CT scans, MRIs, hepatic and biliary function tests (to check for things like gallstones, enlarged spleens, etc) cost upwards of $2500 per pop with X-rays costing around $500 and MRIs and CTs and function tests costing upwards of $5000.

Dental work because of thalassemia-related dental problems can cost anywhere between $500 to $5000.  A tooth that died for no other reason aside from consistently poor oxygen and blood delivery to the tooth (what my dentist and doctor said) is costing me $1500.


If you do some easy math and factor in a conservative estimate of 1 ER visit a year that requires overnight hospitalization, 6 doctor's visits, 4 blood draws, 1 diagnostic imaging, and 2 bottles of antibiotics, the grand total is:

$15,000 + $600 + $400 + $3500 + $200 = $20,000+

That doesn't include 1 transfusion done because you get knocked out with pneumonia or some other major febrile illness and it also doesn't factor in additional hospitalization and then the diagnostics junk they do when you do get admitted.  After all, if you send yourself to the hospital, you're probably really sick, right?

Now factor in regular transfusion therapy and chelation therapy and additional medical care and it's not hard to see just HOW MUCH money needs to go into caring for thalassemia.

It's absolutely freakin' crazy and in the US, if you are uninsured or if you have poor insurance (insurance companies WILL and DO refuse to insure you because of thalassemia or will force you to go on an expensive and bad HIPAA plan after you exhaust COBRA), thalassemia and other chronic health conditions can and oftentimes WILL force a patient and/or the patient's family into bankruptcy.

Hi,

I can't talk about the price of the hospital, etc because I don't pay for it in Spain. The cost of my monthly Exjade is around 5000€. From that 5000€ I pay around 45€. The rest is paid by the Government. It would be impossible to afford the cost of Exjade if it wasn't for that cause it is at least three times the amount I hearn per month at work.

I know that in other countries of the European Union that is different and Exjade must be paid completely by the patient. Spain is receiving people from that countries that need the treatment but that they can't afford it at home. I think it is a pitty that they have to leave their lives there to start a new one here with a new language, etc but it is also true that one should do everything to be ok and if the way to do it is temporarily emigration, that's what one should do.

Kind regards,

Laura.