The NZ Organisation for Rare Disorders (NZORD) is the country's biggest charity for rare diseases.

It says, before the election, Labour made a multi-million dollar pledge to treat rare diseases.

NZORD says the $20 million promise was to allow rare disease patients to access life-saving medicines.

It would have been paid over four years.

The government denies ever promising the fund, while saying money would still be available for people suffering rare diseases.

NZORD chief executive, Dr Collette Bromhead, met two Labour MPs last week.

She says they told her that the fund won't be part of the upcoming Budget.

The NZ Herald reports that the pledge came from Labour's then health spokesman, David Clark.

Media reported it at the time.

Clark is now the minister of health.

Dr Bromhead says the cancelled fund is a complete U-turn by the government.

"It has been done without any consultation with the rare disease community," she says.

"It leaves these vulnerable patients with no way to access the essential medicines that could extend their life..."

No promises made

But Health Minister Clark denies that he made specific funding promises to the NZORD.

He told Newstalk ZB that Labour had made no specific commitment in the coalition agreement.

He says he will find a solution.

"It was something I was concerned about in Opposition and I was concerned that Pharmac might not continue with the fund that it had set up," he says.

Pharmac has approved four medicines for rare diseases in the last few years.

Its programme makes $5m available per year, for five years, to fund rare disorder medicines.

Clarks says Pharmac has assured him that it will continue with that fund.

There are around 377,000 patients in New Zealand with a rare or life-threatening disease.

NZORD has been helping them for 25 years.

Dr Bromhead says officials now say her organisation's government contract is under review.

She calls it a "double blow".

Sources:

• NZ Herald
• NZORD
• Image credit: NZ Herald

Thanks to a new website, you can ship your cremated remains to a Republican lawmaker should you die as a result of the plan. Continue reading

‘Nobody dies because they don't have access to health care,' GOP lawmaker says. He got booed.

Catholic health and ethics experts, however, said there is no definite answer as to its implication on pastoral care. Will a priest anoint a patient who is about to undergo assisted suicide? How about a Catholic funeral for those who the procedure?

"You really can't give an answer," said Sister Carol Keehan, a Daughter of Charity nun who became president and CEO of the Catholic Health Association in 2005.

She told the Catholic News Service that if someone confessed about the individual situation, his or her culpability "remains between the person and God."

"I don't think we ought to ever decide what should happen in the internal forum between the mercy of God and a priest working with someone," said Keehan.

Marie T. Hilliard, director of bioethics and public policy at the National Catholic Bioethics Center in Philadelphia, said the question is not a matter of ethics but of "the governance of the church in terms of access to sacraments."

She said the denial of absolution is not the call of any one ethicist, "but the judgment of the confessor at the time, considering the intention of the penitent to reform."

Archbishop Terrence Prendergast of Ottawa, Ontario, said in a pastoral letter that "the intentional, willful act of killing oneself or another human being is clearly morally wrong."

"To formally cooperate in the killing of the disabled, frail, sick or suffering, even if motivated by a misplaced compassion, requires a prior judgment that such lives do not have value and are not worth living," said the archbishop.

He said those who participate in assisted suicide do not have "the proper disposition for the anointing of the sick."

The Code of Canon Law says anointing of the sick "is not to be conferred upon those who persevere obstinately in manifest grave sin." But the 1983 code now in effect dropped a norm from the 1917 code that had denied a Catholic funeral to those "who killed themselves by deliberate counsel."

In a survey done in Canada, majority of Canadians believes psychological suffering on its own should never be grounds for granting a doctor-assisted death.

Majority, however, supports lethal prescriptions for terminally ill children and youth.

Sources

Catholic News Service/Crux
National Post
CBC News
Image: Catholic News Service/Crux

When a New York Times report drew attention to this situation, the archdiocese insisted it was paying "under protest" and only because it could not control the union's health-care programmes.

The Times report, which focuses on about 3000 employees at the nursing homes and health clinics operated by the archdiocese, said the archdiocese, albeit reluctantly, has been paying for a health care plan that covers contraception and even abortion for these workers.

The archdiocese belongs to the League of Voluntary Hospitals and Homes, a multi-employer organisation that negotiates with the union every few years for a joint labour contract.

The Times quoted Bruce McIver, the president of the league since 1991, as saying he recalled that some Catholic organisations had expressed concern about paying for the contraception benefits in the mid- to late 1990s.

But in recent years, as the number of Catholic hospitals in the city dwindled, "they just kind of stopped, from my perspective, paying attention to this issue," he said.

"Eventually, the Catholics just said, you know, we are going to ignore the issue and pay into the fund and people are going to make their own choices about contraception and so forth."

Archdiocesan spokesman Joseph Zwilling said that Cardinal John J. O'Connor and the archdiocese objected to these services being included in the health insurance plan when joining the league in the 1990s.

But the cardinal then decided "there was no other option if the Catholic Church was to continue to provide health care to these union-affiliated employees in the city of New York," Zwilling said.

In opposing mandatory contraceptive coverage in the "Obamacare" federal health plan, Cardinal Dolan has repeatedly said that it would be a gross violation of religious freedom to compel Catholic institutions to pay into plans that provide contraceptive coverage.

Sources:

New York Times

Archdiocese of New York

Image: CatholicPhilly

More than 40 Catholic organizations sued the Obama administration over a government requirement that most employers provide birth control coverage as part of their employee health plans.

The mandate forces most employers to provide coverage, either directly or through their insurance companies. The U.S. Health and Human Services Department adopted the rule to expand health care for women. Last year, an advisory panel from the Institute of Medicine recommended including birth control on the list of covered services, partly because it promotes maternal and child health by allowing women to space their pregnancies.

The original rule includes a religious exemption that allows churches to opt-out of the mandate, but keeps the requirement in place for religiously affiliated charities.

Cardinal Timothy Dolan said that the compromise reached earlier this year is not sufficient because the exemptions made for churches are too restrictive. He charged that the White House is "strangling" the church over the matter.

"They tell us ... if you're going to be really exempt from these demands of the government, well, you have to propagate your Catholic faith and everything you do, you can serve only Catholics and employ only Catholics," Dolan said.

"We're like, wait a minute, when did the government get in the business of defining for us the extent of our ministry?" Dolan said.

However, a California bishop says he and some other bishops are worried that the church's campaign against the mandate is becoming too political and could hurt the Catholic Church.

Bishop Stephen Blaire of Stockton expressed concern that there were different groups trying to co-opt the mandate debate and make it into a political issue, "and that's why we need to have a deeper discussion as bishops."

He said that he was "worried that some groups 'very far to the right' are trying to use the conflict as ‘an anti-Obama campaign.'"

Image CBS This Morning

Congregation Leader Anne Campbell set the scene with her reflection on ‘Mercy, the business of our lives.' Keynote presenters included public health executive Dr Lester Levy, on skilled governance, and Dr Philip Hill, currently McAuley Professor of International Health in Dunedin, who spoke on his research in tackling TB and pneumonia in The Gambia and on mentoring young health graduates in developing nations today.

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The hospital which was originally built on Makogai Island in the Lomaiviti Group has been the destination for the treatment of leprosy since 1911.

Two new leprosy wards, the Karuru Ward and the Mother Mary Agnes Ward were opened as part of the centenary celebrations.

The Pacific region's first specialised dermatology laboratory constructed at a cost of about $1million was known as the Daulako Mycobacterium Reference Laboratory, was also opened as part of centennial celebrations at the PJ Twomey.

A leprosarium Makogai was opened by the British Fijian government in 1911 and run by the Missionary Sisters of the Society of Mary,(SMSMs). In 1969 this leprosarium was closed and patients needing treatment continued to be cared for by the SMSM sisters at the P. J. Twomey Memorial Hospital in Suva. The sisters continued their involvement by running the hospital until it became a Fiji Government hospital in the 1990s.

Patrick Twomey, who become known as "The Leper Man" established a charity with the same name. This one-man operation grew into a dedicated team who ran the Trust Board which in turn gave rise to the Pacific Leprosy Foundation which continues operating today providing aid to leprosy sufferers in the South Pacific islands.

Source

• The Fiji Times
• Image: The Fiji Times