My friend asked me to help publicise an appeal for a little girl called Chloe who has a rare disorder called Pompe Disease and needs $200,000 to $300,000 a year to be treated. This is a lot of money and is likely to be beyond the means of compassionate, ordinary people.
This issue raises the following questions:
The best approach is through social insurance, i.e. insurance provided by the state. It should cover all eligible people and be funded by taxation or compulsory contribution (that can be adjusted based on actual experience) or a mix of both sources of funding.
It is not a good approach to leave these problems to charity. Apart from the high cost of collecting and accounting for the donations, there is the risk that some of these cases may be exploited by unscrupulous people who wish to make a personal profit from the effort. (However, in Chloe's case, I find that the donations will be administered by the hospital).
This issue raises the following questions:
- Should something be done to help people like Chloe who are borne with a rare disorder?
- Should the state take this burden from the parents?
- Can a solution be found using private insurance?
I must first rule out private insurance as most people are not likely to take up insurance against the unexpected and undefined risks of life - until it happened. There are other problems associated with the profit motive of insurance companies, leading to dispute on claim settlement or unfair rejection of legitimate claims.
The best approach is through social insurance, i.e. insurance provided by the state. It should cover all eligible people and be funded by taxation or compulsory contribution (that can be adjusted based on actual experience) or a mix of both sources of funding.
Some issues to be considered by the state are:
- Should the social insurance pay for expensive treatment that boost the profit of pharmaceutical companies?
- Should there be a cap on the amount that are to be funded by the state?
Some possible approaches that are helpful are:
- The compensation should be for the actual cost of treatment and can be subject to a cap of say $100,000 and should be used under proper guidance.
- The cap may not be sufficient to meet the needs of serious cases, but it does help to provide some relief to the parents. It may be possible for the pharmaceutical company to reduce the cost of the drugs.
- More importantly, there could be many cases where this type of compensation would be helpful to the parents.
It may be difficult to design a social insurance scheme, but this should not stop us from giving attention to this matter. If nothing is done, then the burden has to be met by the parents or family members (who may not have the financial means) or the patient will not be treated due to lack of funds.
It is not a good approach to leave these problems to charity. Apart from the high cost of collecting and accounting for the donations, there is the risk that some of these cases may be exploited by unscrupulous people who wish to make a personal profit from the effort. (However, in Chloe's case, I find that the donations will be administered by the hospital).
Tan Kin Lian
18 comments:
Request interested parties to treat the case as a research project and supported by a research fund.
The state should take the initiative and should be the one responsible for such situation.The state cannot let this girl die just because she is unable to raise the money for treatment.This is a special situation and it doesn't happen everyday, right?
The parent of this girl should write to the President for help. Don't wait.I beleive he will help.This is an chance for him to show he is concerned about the ordinary folks plight.
Try telling this to KK Hospital, they would say not in their capacity to treat this case as research.
Another more visible case of State help required is HIV+ patients. Beside no generic drugs available here, no subsidized medicine and limited medisave withdrawals for drug treatment mean more of them staring death at doorstep.
Govt should treat such patients with dignity and compassion. Granted many deserve death due to past lustful living, but many are infected without knowledge.
Whether one believes in God or not, there is documentary proof that one must have a charitable heart to garner good kama for oneself or for the offsprings, and Govt is a human face, not some robot being without a heart.
Perhaps the hospital & doctors should wave the cost since it is rare case or the government should subsidize heavily.
Before clamouring that the hospitals should help, the government should help, the doctors should help, perhaps we could help ourselves.
As Mr Tan Kin Lian rightly pointed out, there could be many cases of such rare diseases where financial help is needed and we need to know the statistics before passing judgement.
There is a Chinese saying a few blind men groping an elephant. Each will tell you what an elephant feels like but nobody has a good grasp of the problem.
If you think just asking the government to compensate will solve the matter, then consider the many aged who have no dependents or even if they do, the many aged who will have handicaps, illnesses that prevent them from working, those who need nursing homes, those who need day care. This is another financial issue when it comes to healthcare which will soon be overwhelming.
As a nation, we have to face many healthcare problems together. We must have the figures before we jump to the conclusion that somebody should foot the bill. Compassion is good naturally but I feel that as MOH probably has seen the elephant.
Hi financialray
The approach of the government is to leave this matter to the family but as the family is not able to afford the expenses, it has to be left to charity. In reality, many of these cases will go untreated.
The government should take the lead to study this problem and introduce a social insurance scheme. It is quite difficult for the ordinary people to make a study and find such a solution.
I think that the government should take the lead, as they have the money, the resources, the information and is elected to do this job.
Hi Mr Tan,
If that is the government's stand, our first priority would be to seek help from charity funds so as not to delay treatment. I am sure the hospital would be able to help direct to the available charity funds that the family can possibly tap into. We also need to understand that the 300k needed for treatment is a life long treatment. Whatever reasons the government has for currently not helping, I believe, is not crucial at this point. Perhaps the bill is too large (300k for life) or perhaps long term prognosis not clear. I believe if resources are infinite, the government would have already helped. As it is, we are unable to see the entire elephant. Now it is best to see if anyone knows which charity funds or maybe the New Paper can highlight the story. I remember the New Paper highlighted a case of a child who needed expensive medical treatment in US last year. Or the hospital may be able to suggest other ways of raising funds.
With 200 to 300 k per year, even the charity sector will find it tough to help. Other than governmental help, I think it's tough for the child to be able to survive.
Hi financialray,
you still miss the point that Mr Tan is trying to stress. GIC or Temasek can afford to lose billions of dollars. What is 5 billions to setup a social insurance fund for the benefits of the poor & old S'porean people. By the way you are talking like garmen people. Are you PAP supporter or garmen person?
Hi,
I am not a PAP supporter not am I a civil servant. It is also not true that GIC or Temasek can afford to lose billions. I am sure they would feel the heat too. What I am trying to do is to give you a full picture. TO see the entire elephant as a whole and to offer the most effective means despite having our hands tied. For all our knowledge, 5 billion may not be enough to set up as a social insurance fund for the benefits of the poor and old Singaporeans, because you forgot to include the ill. The statistics may be way beyond us and someone has rightly mentioned, 300k a year for life may be beyond even the government. Check out wikipaedia. The Canadian government also has strict criteria how many kids with Pompe's disease they can help. Its not just one kid, one disease we are talking about here. To set the record straight, I see no point in scoring any political points for myself but we take one step back and see the full picture.
Hi financialray,
you sound like garmen person or PAP supporter. Maybe 200k or 300k is peanut to you but meant alot of money to the poor, old, sick & needy people. If millionaire ministers, PM, President can get million dollars in pay, bonus & pension money after their retirement from taxpayers' money collected from GST, COE, ERP, Singapore Pool, casino, etc., what is 10 per cent from tax income set aside yearly for social insurance.
Hi financialray
Can you call me at 66599611. I wish to talk to you.
Hi Mr Tan,
I do not wish to be dragged into the political arena.
I believe your website is doing the public a lot of good by highlighting social issues but I prefer to be apolitical.
I am a pragmatist. I believe many Singaporeans are.
25k per month is peanuts to some senior minister's wife but not to me.
But does the animosity help to solve the problem?
Do we really know the amount of money to fund such an insurance to cover the old, the ill and the poor?
Dispel the hatred so that we could all be a part of the solution. Worse, more animosity will lead to distrust and drop in credibility of this website.
Let us try to work together to be part of the solution, not disunite to be part of another problem.
Hi financialray,
fyi, Canada's population is aprox. 33,487,208 million people whereas Singapore has only 4,740,737 million people so you cannot compare. Mr Tan mentioned Chloe, the little girl with Pompe rare sickness maybe just 1 or 2 cases so we must show some human compassion & sympathy towards her. Singapore Dept Of Statistics has the means & can easily collect datas, informations, statistics, etc. with garmen money & resources. Don't forget PAP garmen has an obligation to look into the welfare, benefit, well-being, job, financial need, healthcare, transport, housing, cpf, etc. of S'poreans first & not F.Ts since they are elected into garmen. Don't forget garmen also gave away scholarship money with no bonds to F.Ts for education who don't even serve S'pore after they graduated with honour but returned to their countries or emigrated to other countries, wasting taxpayers' money.
Hi financialray,
this is not about politics but we are talking about social responsibility towards society. Every human being got the right to live whether poor, old, unfortunate or sick. Show our kindness, mercy, gentleness, love, patience, peace, grace, understanding, sympathy & compassion towards society.
How blessed are the poor in spirit: theirs is the kingdom of Heaven. Blessed are the gentle: they shall have the earth for their heritage. Blessed are those who mourn: they shall be comforted. Blessed are those who hunger and thirst for what is right: they shall be satisfied. Blessed are the merciful: they shall have mercy shown them. Blessed are the pure in heart: they shall see God. Blessed are the peacemakers: they shall be called sons of God. Blessed are those who are persecuted in the cause of right: theirs is the kingdom of heaven. Blessed are you when people abuse you and persecute you and speak all kinds of calumny against you on my account. Rejoice and be glad, for your reward will be great in heaven.
Hi financialray,
Do you get the point now or are you still not convince. We must show some human kindness, mercy, compassion, etc. towards the poor, old, unfortunate, sick, needy, etc. Maybe you are not in their shoes or situations so you don't feel the desperation, worries & helplessness without money or help. Why are you so worry about getting the fund for social insurance, not asking you for money. Mr Tan is trying to get the opinion, suggestion, support, etc. or perhaps petition to the garmen or President to setup a social security insurance fund.
Lest I get misunderstood or misquoted, let me explain that I am all for compassion, empathy,mercy.
My worry is that we need to analyse what we are asking for in the social fund, not a general statement and without statistics to back up our case. For which, the kind of response from the gahmen is to be expected. "Why worry, just ask gahmen , not asking me for money " is resentment.
Bringing up FT is resentment.
Resentment clouds your vision and poisons your mind.
True compassion requires a calm mind and a caring heart to take ACTION to help people in need.
Resentment will only direct you to channel your energy into the negative channels.
If the gahmen sees that we gain merit by taking action to help the poor, the ill and the elderly in need, it will spur them to act in kind likewise. For as you said, they have the resources, the info, the money...
Hope you can see things in a kinder perspective. I only wish life is so simple to bless every good soul.
Hi financialray,
I think your action of getting thing done is rather slow & delaying tactic, slowly analyse, worry this & worry that, scare this & scare that cannot get thing done quickly. Do you think those people in need of help got the time to think before they act. They are so desperate, feeling despair, lost of mind or at their wit ends. They may commit suicide alone or together with their love ones. Just look at today Channelnewsasia news on 2 bodies found in Bedok Reservoir, a 32 year old mother & 3 year old son for instance. If garmen & society don't act fast, co-operate & act together, you will see & hear more news on people committing suicide or dead bodies. I think you still don't see the clear picture, garmen & society must work hand in hand, care, concern & share responsibilities with garmen taking the lead.
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