00:00Despite committing support for the Children's Life Fund Amendment bill,
00:05concern was still expressed by the opposition and independent benches over certain clauses.
00:11Dr. Amri Brown led the charge for the opposition, asking for the estimated number of children
00:17who will now benefit from the expanded list of conditions.
00:21Every member here knows that with these expansions,
00:24we can anticipate a deluge of new applications.
00:30That is inevitable.
00:33I would say it's welcome because it's a sign that more children, more cases,
00:39would be receiving the required attention,
00:41but it also demands that the Ministry of Health, the Ministry of Finance, the Ministry of Planning
00:48would have to make proper provision,
00:51bearing in mind, of course, that we're talking in the mean in U.S. dollars.
00:56He also questioned whether the government will consider local treatment
00:59by local specialists at private institutions for the same conditions outlined.
01:05We've considered foreign care.
01:07We've considered local care by foreign specialists who are coming here.
01:11What about local care by some of our top-level local specialists,
01:19which such may not be available in the public health system?
01:23Dr. Brown says many of the declined cases were based on poor prognosis.
01:28In the opinion of the board, the authority,
01:34the prognosis in those cases was too bleak.
01:39The likelihood of success or survival, success in the treatment or management
01:47was too low to justify or support an approval
01:53and the committal of these funds.
01:58And that's why he questioned.
02:00Why would you wish to take that burden
02:05and now put it, take it from an authority
02:11and put it on a minister, a politician,
02:18appointed by a prime minister?
02:20What is the objective of doing that?
02:24A medical practitioner herself, Independent Senator Dr. Desiree Murray,
02:28supports the bill, but questions the terminology used.
02:32She calls for changing the term illness
02:35to the broader, more inclusive term condition.
02:39Using the term condition ensures that we capture
02:43the full spectrum of health states
02:46that may affect a child's longevity or quality of life.
02:50This distinction matters as it may determine
02:55who is eligible for life-saving, life-extending
03:00or life-enhancing treatment under the fund.
03:05It ensures that children are not excluded
03:08due to imprecise language.
03:11Dr. Murray does not support a fixed list of illnesses.
03:15Also on the independent bench, Senator Francis Lewis says
03:18the unavailability of audited financials
03:21for the Children's Life Fund since 2014 is unacceptable.
03:25Please, and this is not a criticism
03:27of what I'm sure are good people.
03:29But as a legislator with a responsibility
03:32for the public purse,
03:34I have to ask the question,
03:36is the money being well spent?
03:37What was spent?
03:39What does the bank account look like?
03:41How do we handle it?
03:42And the basics of having audited financials
03:46cannot be overstressed.
03:48He says the minister's authority
03:51to reject board decisions
03:52just does not stand up to scrutiny.
03:55The board of the fund is appointed by the minister.
03:59And then that same minister overrules that committee
04:02and jumps, rejects their decision.
04:05I would expect the board to resign.
04:08I would expect that very few persons of integrity
04:12would want to serve on such a committee
04:13because that's bad governance
04:17and being perhaps a little harsh.
04:19But you don't do it that way.
04:21Independent Senator Deerup Timal could not agree more.
04:25Granting unilateral review authority to the minister
04:29can have one or two consequences.
04:33It politicizes individual medical cases.
04:38It may undermine the independence and credibility
04:41of the Children's Life and Act board.
04:45And it opens the door to lobbying and favoritism,
04:49real or perceived.
04:50And in my opinion,
04:53it can always,
04:55because of this flexibility and power of the minister,
04:58it can restrict future possible donations
05:03on the basis of trust and credibility.
05:05He suggests a tribunal be established to consider appeals.
05:10I wish you to worry.
05:11Rupner Rai in TV6 News.
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