‘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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Top Trump adviser bluntly contradicts president on covid-19 threat, urging all-out response

A top White House coronavirus adviser sounded alarms Monday about a new and deadly phase in the health crisis, pleading with top administration officials for “much more aggressive action,” even as President Trump continues to assure rallygoers the nation is “rounding the turn” on the pandemic.



Deborah Birx wearing a suit and tie: Deborah Birx delivers remarks on the pandemic in the White House last April. (Jim Lo Scalzo/EPA-EFE/Shutterstock)


Deborah Birx delivers remarks on the pandemic in the White House last April. (Jim Lo Scalzo/EPA-EFE/Shutterstock)

“We are entering the most concerning and most deadly phase of this pandemic … leading to increasing mortality,” said the Nov. 2 report from Deborah Birx, coordinator of the White House coronavirus task force. “This is not about lockdowns — It hasn’t been about lockdowns since March or April. It’s about an aggressive balanced approach that is not being implemented.”

Birx’s internal report, shared with top White House and agency officials, contradicts Trump on numerous points: While the president holds large campaign events with hundreds of attendees, most without masks, she explicitly warns against them. While the president blames rising cases on more testing, she says testing is “flat or declining” in many areas where cases are rising. And while Trump says the country is “rounding the turn,” Birx notes the country is entering its most dangerous period yet and will see more than 100,000 new cases a day this week.

Through a spokesperson, Birx did not respond to a request for comment.

Other health experts, including Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases, have warned of record surges in cases and hospitalizations as the United States records more than 9 million cases and 230,000 deaths. “We’re in for a whole lot of hurt,” Fauci told The Washington Post late Friday, predicting a long and potentially deadly winter unless there’s an “abrupt change” — prompting Trump to suggest he planned to fire the scientist after the election.

But Birx’s daily missives go further, revealing how much the administration’s internal reports are in direct conflict with Trump’s public pronouncements that downplay the seriousness of the threat and erroneously suggest few people are dying. They also speak to the increasing desperation of health officials to spotlight the risks of a pandemic that is forecast to take thousands more lives as the weather worsens unless people change their behaviors.

Still, the increasingly dire tone of her reports has gotten little traction, according to an administration official who works with Birx and spoke on the condition of anonymity to share sensitive information. “She feels like she’s being ignored,” the official said.

Birx’s message “has been urgent for weeks,” said another administration official, “as has the plea for the administration to ask the American people to use masks, avoid gatherings and socially distance, basically since it became apparent that we were heading into a third surge.”

The report hits hard on the worsening situation: “Cases are rapidly rising in nearly 30 percent of all USA counties, the highest number of county hotspots we have seen with this pandemic,” it said. “Half of the United States is

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CDC rolls out new guidance urging masks for passengers, workers on public transit

The U.S. Centers and Disease Control and Prevention (CDC) issued new guidelines on Monday calling for all passengers and workers on planes, trains, buses and other public transportation to wear masks to prevent the spread of coronavirus.

The CDC explained in the guidance that travel on public transportation increases the risk of spreading COVID-19, especially in cases in which passengers or employees cannot practice social distancing. 

“Given how interconnected most transportation systems are across the nation and the world, local transmission can grow quickly into interstate and international transmission when infected persons travel on public conveyances without wearing a mask and with others who are not wearing masks,” the CDC’s guidance reads.

The recommendations follow pressure from airline industry leaders, as well as widespread agreement on the effectiveness of masks and face coverings in blocking the spread of COVID-19, The Washington Post noted.

The Monday recommendation came after a request from Vice President Pence to CDC Director Robert Redfield, according to the newspaper. The new language gives the airline industry greater leeway in pressing passengers to wear masks.

The move also comes after the White House blocked the CDC from implementing a rule mandating that all passengers and employees wear face coverings on transit, The New York Times first reported. That order would have been the administration’s strictest measure to curb the spread of COVID-19.

The new CDC guidance states: “Face masks help prevent people who have COVID-19, including those who are pre-symptomatic or asymptomatic, from spreading the virus to others. Masks are most likely to reduce the spread of COVID-19 when they are widely used by people in public settings.”

The guidelines provide exemptions for some travelers including children under the age of two and others with written instructions from a medical provider not to wear masks. 

President TrumpDonald John TrumpNearly 300 former national security officials sign Biden endorsement letter DC correspondent on the death of Michael Reinoehl: ‘The folks I know in law enforcement are extremely angry about it’ Late night hosts targeted Trump over Biden 97 percent of the time in September: study MORE, who initially downplayed the efficacy of masks, was diagnosed with COVID-19 earlier this month. He has since recovered. 

Health officials agree that wearing a face mask or covering and social distancing are the most effective ways to slow the spread of COVID-19.

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