‘Heart-breaking’: 30,000 sign petition urging Pharmac to fund inflammatory bowel disease medicine

It is too late for Hayley Greer.

The 24-year-old from Lower Hutt had surgery to remove her colon in January, after medicine for her inflammatory bowel disease stopped working. She will live with an ostomy bag for the rest of her life.

She joined dozens of protestors on a march through Wellington’s streets on Wednesday afternoon to present a 30,000 signature petition to Parliament calling on Pharmac to fund ustekinumab, a medicine used to treat bowel disease.

More than 20,000 New Zealanders live with diseases such as Crohn’s or colitis but if the funded drugs don’t work, or for only a limited time, there are no other options but surgery.

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Hayley Greer, 24, says she may not have needed major surgery if ustekinumab was funded in New Zealand.

ROBERT KITCHIN/Stuff

Hayley Greer, 24, says she may not have needed major surgery if ustekinumab was funded in New Zealand.

“If it was funded it could’ve prevented me having to have my colon out. It could’ve prevented my whole surgery,” Greer said.

“That is really hard to process.”

Ustekinumab is funded in more than 35 countries overseas. Without the expensive treatment, doctors condemn patients to a life of unnecessary pain, Crohn’s and Colitis NZ chair Richard Stein said.

“When people don’t respond to medication we have nothing left except surgery. The disease also comes back,” he said.

Marian O’Connor, co-chair of the Inflammatory Bowel Disease nurses group said nurses found it “frustrating, heartbreaking and soul-destroying” to tell young patients they needed to have major surgery.

People are most commonly diagnosed with Crohn’s or colitis as teens or young adults.

“Sitting with a 17-year-old girl explaining that her bowel is going to be removed and that she will have to live the rest of her life with a stoma bag is heartbreaking,” she said.

Pharmac’s own committee advised that it fund ustekinumab in May. Its chief executive Sarah Fitt told protestors she had regular discussions with suppliers and hoped the medicine would be funded soon. The drugs were on a waiting list.

Chair Steve Maharey said they would “do their best” to get the medicine funded.

Jessica Port, 34, (right) from Porirua was the last person in the country to get ustekinumab on compassionate grounds, and wants others to have the same opportunity.

ROBERT KITCHIN/Stuff

Jessica Port, 34, (right) from Porirua was the last person in the country to get ustekinumab on compassionate grounds, and wants others to have the same opportunity.

“I want to reassure you these issues are in the top of our mind. We would like to solve them and will do our best to solve them,” he said.

“I know these are difficult moments. We would love to give you [a resolution]. We are going to try our best.”

But the words are of little comfort to Greer, who underwent life-altering surgery in January and has been in-and-out of hospital since then.

She was diagnosed in 2014, as a first-year university student. She had two years in remission before the disease came back. Towards the end

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EU will fund transfer of Covid-19 patients across borders to prevent hospitals buckling

The European Union has earmarked 220 million euros ($257 million) to fund the transfer of Covid-19 patients across its borders to prevent the hospital systems in the 27-nation bloc from buckling.



a person standing in a room: Healthcare workers wearing personal protective equipment (PPE) care for Covid-19 patients in an intensive care unit (ICU) at Thomayer hospital on October 14, 2020 in Prague. - The Czech Republic has the European Union's highest rate of coronavirus infection, according to the European Centre for Disease Prevention and Control. (Photo by Michal Cizek / AFP) (Photo by MICHAL CIZEK/AFP via Getty Images)


© MICHAL CIZEK/AFP/AFP via Getty Images
Healthcare workers wearing personal protective equipment (PPE) care for Covid-19 patients in an intensive care unit (ICU) at Thomayer hospital on October 14, 2020 in Prague. – The Czech Republic has the European Union’s highest rate of coronavirus infection, according to the European Centre for Disease Prevention and Control. (Photo by Michal Cizek / AFP) (Photo by MICHAL CIZEK/AFP via Getty Images)

Europe has become the world’s epicenter of the virus for the second time since the pandemic began, forcing several countries to reimpose national lockdowns as a second wave envelops the region and infections surpass 10 million.

Health officials in several EU countries have warned that their hospitals are near capacity and have raised the alarm that more cooperation is needed to ensure facilities are not overwhelmed.

“Numbers of cases are rising, numbers of hospitalizations are rising, numbers of deaths are rising — not as fast, fortunately, because we understand better today how to treat COVID patients and how to deal with disease,” EU Commission chief Ursula von der Leyen said Thursday night.

“But the spread of the virus will overwhelm our healthcare systems if we do not act urgently.”

Von der Leyen made her comments at a meeting with EU leaders, in which she laid out a number of measures to streamline and centralize the bloc’s Covid-19 response, from the use of tests, tracing apps and the distribution of vaccines.

The EU chief said the bloc was intensifying its efforts in obtaining and validating a vaccine, and that its members had agreed to a “fair distribution” to each state.

“The member states will all get vaccines at the same time and at the same conditions, based on their share of the EU population they have,” she said.

The EU will also now carry out rolling reviews from pharmaceutical companies, who will share quicker “step-by-step” updates with the bloc as they carry out their trials.

In terms of testing, the bloc is working to validate rapid antigen tests that can provide quicker results than the PCR (polymerase chain reaction) tests currently in use. In addition, the EU aims to mutually recognize test results across the bloc.

It will also try to share data collected through tracing apps. Twenty-two of the 27 member states have developed or are in the process of developing an app, and three have connected to a new European gateway since Monday. The 19 others hope plan to join in November.

Von der Leyen said there had been around 50 million app downloads in the bloc, but that was “not enough.”

“We need across the board coverage in the European Union,” she said.

The EU’s effort to centralize its response comes after it was criticized for poor coordination at the beginning of the region’s outbreak. Hard-hit countries like

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Connecticut Department of Public Health receives five-year, $3.5M grant from CDC to fund suicide prevention efforts

The Connecticut Department of Public Health has received a five-year, $3.5 million grant from the Centers for Disease Control and Prevention to enhance statewide suicide prevention efforts, Gov. Ned Lamont announced at St. Francis Hospital and Medical Center in Hartford Thursday morning.

The grant, which runs through Aug. 31, 2025, will be a joint effort between DPH, the Connecticut Department of Mental Health and Addiction Services, the Connecticut Department of Children and Families and UConn Health. The prevention efforts will concentrate on populations that are disproportionately impacted by suicide or attempted suicide, including middle-aged adults, particularly men with mental illness or substance use disorder, and adolescents and young adults (ages 10-24).

State officials at the news conference spoke about the intense mental health toll the COVID-19 pandemic has taken on Connecticut residents.

With COVID-19 cases increasing and the winter approaching, “I can feel the stress building again,” Lamont said. He described a “witches’ brew” of health concerns, economic distress and social isolation.

“I hear a lot of, ‘I thought we had a light at the end of the COVID tunnel and it looks like it’s receding,’ ” Lamont said. “I hear the economic anxiety every day.”

Dr. Steven Wolf, chairman of emergency medicine at St. Francis, said that social isolation has exacerbated local residents’ experiences of mental illness and substance use disorder.

Seven people under the age of 18 have died by suicide in Connecticut this year, including four since October, according to Miriam Delphin-Rittmon, the commissioner of the state Department of Mental Health and Addiction Services.

Connecticut averages about eight suicides of children under the age of 18 annually, Vannessa Dorantes, the commissioner of the state’s Department of Children and Families, said. She emphasized that the state must “work together to get that number to zero.”

On average, 403 Connecticut residents died annually of suicide between 2015 and 2019, a 14% increase from the annual average of 351 residents between 2010 and 2014, according to state officials.

“Though Connecticut has one of the lowest suicide rates in the United States, we know even one death is too much,” Delphin-Rittmon said.

Karen Jarmoc, president & CEO of the Connecticut Coalition Against Domestic Violence, said that calls to CTSafeConnect, the organization’s domestic violence hotline, rose by 30% due to the COVID-19 pandemic and domestic violence advocacy groups across the state faced increased demand for their services.

“When the pandemic hit in March in our state, understandably there were shut-in orders to keep people safe from a public health standpoint,” Jarmoc said. “From our perspective, it created a precarious situation where victims of domestic violence were shut in with their abusive partner.”

Early in the pandemic, 18 sites across the state that house victims of domestic violence had to send some people to hotels in order to reduce capacity and the risk of a COVID-19 outbreak, she said. That resulted in more than $390,000 in unexpected fees to house about 200 adults and 200 children in hotels, from March through

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EU to fund transfer of COVID-19 patients across borders to prevent hospitals collapse

BRUSSELS (Reuters) – The European Union will finance the transfer of patients across borders within the bloc to prevent hospitals from getting overwhelmed as COVID-19 infections and hospitalizations spike in the continent.

European Commission President Ursula Von Der Leyen gives a news briefing at the end of a virtual conference with EU leaders about EU government’s measures against the coronavirus disease (COVID19) crisis, in Brussels, Belgium, October 29, 2020. Olivier Hoslet/Pool via REUTERS

After a video conference of EU leaders to discuss the health crisis on Thursday, the head of the EU Commission Ursula von der Leyen said the EU executive had made available 220 million euros ($260 million) to move COVID-19 patients across borders.

“The spread of the virus will overwhelm our healthcare systems if we do not act urgently,” she said.

At the meeting leaders agreed to better coordinate efforts to battle the virus as infections in Europe exceeded 10 million, making the continent again the epicenter of the pandemic.

EU countries want to avoid divisions which dogged the 27-nation bloc at the beginning of the pandemic, when nations vied with each other to buy scarce medical equipment.

To better trace infections, von der Leyen said the EU would work for the quick validation at EU level of rapid antigen tests, which allow quicker results than the standard PCR (polymerase chain reaction) molecular kits.

The Commission is also intensifying its efforts to get potential vaccines against the new coronavirus.

The EU was in talks with four companies, and had already sealed supply deals with another three, she said.

The EU has secured potential vaccines being developed by AstraZeneca, Sanofi and Johnson & Johnson.

It has also said it is in talks with Moderna, CureVac and a partnership of Pfizer and BionTech. Reuters reported in September that the EU was also in preliminary talks with Novavax.

The chair of the meeting, Charles Michel, said EU leaders committed to a fair distribution of vaccines once available. That would be done in proportion to population, von der Leyen said.

Michel said vaccination plans at a national level were crucial to make sure the first limited doses of vaccines could be distributed quickly to those most in need.

Many countries however have not yet defined their inoculation plans, and have different targets.

($1 = 0.8461 euros)

Reporting by Francesco Guarascio, Robin Emmott, Jan Strupczewski; editing by Richard Pullin

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HHS Loosens Restrictions on COVID Relief Fund Spending

Responding to the concerns of physician and hospital associations and some members of Congress, the Department of Health and Human Services (HHS) has backed off from recent reporting requirements for groups that have received payments from the Provider Relief Fund (PRF), a $175 billion fund established by the CARES Act. However, it’s unclear whether HHS’ new approach will satisfy healthcare providers.

In an October 22 policy statement and guidance that significantly revised the content of guidance released on September 19, HHS explained that it had imposed the reporting requirements to prevent PRF payments from making some providers more profitable in 2020 than they were before the coronavirus pandemic.

HHS’ September guidance “has generated significant attention and opposition from many stakeholders and members of Congress,” the department said. “There is consensus among stakeholders and members of Congress who have reached out to HHS that the PRF should allow a provider to apply PRF payments against all lost revenues without limitation.”

The American Group Medical Association (AMGA) sent HHS a letter on October 21, the day before the policy change, in which it explained what’s at stake. Earlier guidance from the department, AMGA noted, had indicated that the providers could calculate COVID-related lost revenues by using “any reasonable method.” That included basing the calculation on the difference between budgeted and actual revenue in 2020.

The September guidance document, in contrast, said that providers had to calculate their lost revenues by computing the negative change in their net operating income from 2019 to 2020.

“Earlier guidance allowed our members to use ‘any reasonable method’ to determine their expenses and losses due to COVID-19,” the letter said. “Now, HHS is changing that calculation to one that will not capture the extent of their losses. AMGA members are still facing severe financial headwinds as they continue to deal with new COVID outbreaks and a difficult economic outlook. Changing the rules in the middle of this pandemic just adds to our members’ existing burdens. HHS should reinstate the earlier standard.”

The October update of the guidance, however, does not do that. Instead, HHS said, “Recipients may apply PRF payments toward lost revenue, up to the amount of the difference between their 2019 and 2020 actual patient care revenue.”

AMGA spokesman Matt Clark told Medscape Medical News that because AMGA members had not yet been asked for their reaction to the new policy, the association could not comment on it.

The Medical Group Management Association (MGMA), which agreed with AMGA’s objections, also had no substantive comment. “This latest update is definitely welcome, but it’s complicated, and we have to analyze it to determine whether it meets our concerns or whether it still needs improvement,” said Mollie Gelburd, associate director of government affairs for MGMA, in an interview with Medscape Medical News.

Getting Down to Nuts and Bolts

Under both sets of reporting requirements, physician practices that received more than $10,000 in PRF payments must report their healthcare-related expenses attributable to the coronavirus that haven’t been reimbursed by

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