Over 400 million people around the world suffer from rare diseases. Approximately 3.5 million of them are Thai, while only some 20,000 have access to treatment.

 

It remains one of the most challenging problems in the public health sphere, due to limited knowledge of the diseases among physicians. The diagnosis usually takes too long, resulting in the patients’ inability to get treatment in time.

 

Last week, Thailand hosted the first “Southeast Asia Rare Disease Summit,” to raise awareness, discuss and find solutions to issues related to rare health conditions in the region.

 

Full story: https://www.thaipbsworld.com/about-3-5-million-thais-who-suffer-from-rare-diseases-have-no-access-to-treatment/

 

-- © Copyright Thai PBS 2022-02-01

 

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That's more than 5% of the population, there's nothing rare about that.

 

52 minutes ago, webfact said:

due to limited knowledge of the diseases among physicians

This suggests to me that the Doctors are untrained morons.

And it's not long back, that Thailand was anouncing that it was one of the World leaders in medical care..... Hmmmm

1 hour ago, webfact said:

About 3.5 million Thais who suffer from rare diseases have no access to treatment

the reason is obvious: rare diseases do not generate much profit for pharmaceutical industries

Just now, Soikhaonoiken said:

And it's not long back, that Thailand was anouncing that it was one of the World leaders in medical care..... Hmmmm

Yes, but the whole world knows Thailand is the Hub of BS.

 

Yeah, I can believe that..... one could be spending a fortune on hospital tests and investigations, but if the doctors do not have the knowledge or experience all it does is generate money... and many here believe that is all  they care about. Has anyone experience of being referred to a specialist in such cases? 

Other than emergency and if you can afford go to outside for any elective surgery or procedure.

50 minutes ago, jacko45k said:

Yeah, I can believe that..... one could be spending a fortune on hospital tests and investigations, but if the doctors do not have the knowledge or experience all it does is generate money... and many here believe that is all  they care about. Has anyone experience of being referred to a specialist in such cases? 

My understanding is all Thai doctors in hospitals are specialists, the general practitioner is not present in Thai hospitals. Clinics maybe.

I don't think there is a referral system. When I go to a private hospital, I may be asking to see a urologist, a dermatologist, or a radiologist. I am steered to them without an intermediary.

I regard many Thai doctors as shills for the pharmaceutical industry. IMO they get paid for every pill they prescribe, which is why multiple prescriptions are issued for every ailment.

4 hours ago, ukrules said:

That's more than 5% of the population, there's nothing rare about that.

 

This suggests to me that the Doctors are untrained morons.

Yes, this is why a lot of us self medicate. And when we have to travel to a large city to get help we often get doctors with little or no experience, just out of school. Give me a break!

1 hour ago, jacko45k said:

Yeah, I can believe that..... one could be spending a fortune on hospital tests and investigations, but if the doctors do not have the knowledge or experience all it does is generate money... and many here believe that is all  they care about. Has anyone experience of being referred to a specialist in such cases? 

Would point out OP is about Thais, they don't pay for hospital care, so no money to generate.

The headline is that 3.5m Thais suffer from rare diseases.  A high number as this is not one disease but many.  Indeed those who suffer from each rare condition in LOS may be less than 100.   There are pharmaceutical companies whose entire focus is on medicines for rare diseases, so the help is out there for many conditions, but these drugs can be eye-wateringly expensive because of the low number of patients to cover the drug development costs, so the biggest reason for lack of treatment is most likely to be cost.

48 minutes ago, BritManToo said:

Would point out OP is about Thais, they don't pay for hospital care, so no money to generate.

Is that true in the private hospitals where I do see them?

Nevertheless, I somehow feel that is the case in my dealings with them.

11 hours ago, Lacessit said:

My understanding is all Thai doctors in hospitals are specialists, the general practitioner is not present in Thai hospitals. Clinics maybe.

I don't think there is a referral system. When I go to a private hospital, I may be asking to see a urologist, a dermatologist, or a radiologist. I am steered to them without an intermediary.

I regard many Thai doctors as shills for the pharmaceutical industry. IMO they get paid for every pill they prescribe, which is why multiple prescriptions are issued for every ailment.

The worst aspect of this system is IMO that there is nobody connecting the loose ends during treatment. Like if you were building a house without a general contractor. After all the health of humans is composed of many factors which are interrelated. And it might well be that only the interrelation of seperate specialist findings leads to the real overall diagnosis - and therefore the appropriate treatment - at all.

 

But at least they connect to your own personal file in the computer which contains quite some info (in my private hospital that is) although you cannot really call that a single point of contact approach like I had in Switzerland where everybody has its own "Family Doctor" which you would approach first and who knows everything about your medical history and will then - if necessary - involve some other specialists.

 

Yes, they like to prescribe medicaments where they can. But at least they care if it is a generic or imported. Price differences may be drastic. At least some of my specialist doctors do. I usually ask at Fascino for alternative prices anyway if this is a more long term medication.

8 hours ago, moogradod said:

 

 

But at least they connect to your own personal file in the computer which contains quite some info (in my private hospital that is) although you cannot really call that a single point of contact approach like I had in Switzerland where everybody has its own "Family Doctor" which you would approach first and who knows everything about your medical history and will then - if necessary - involve some other specialists.

 

 

I have yet to find a doctor here who has asked me to relate or document my previous medical history. My GP in Australia had comprehensive blood checks done once a year, which I still have done here via a pathology lab. I go back to him for feedback on the results.

23 hours ago, Homburg said:

T  There are pharmaceutical companies whose entire focus is on medicines for rare diseases, so the help is out there for many conditions, but these drugs can be eye-wateringly expensive because of the low number of patients to cover the drug development costs, so the biggest reason for lack of treatment is most likely to be cost.

When being treated for Hep C was on 2 drugs for 120 days.

One of them was near $1000 per pill

A whole course of treatment with generics from India was $220