‘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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BRTA: No fitness certificate for public transport without no smoking sign

File photo of Bus drivers often have to work exceptionally long hours, resulting in greater chances of accidents as they tire Mahmud Hossain Opu/Dhaka Tribune

Survey found over 91% of bus drivers and helpers smoke on the bus

The Bangladesh Road Transport Authority (BRTA) have instructed all their circle offices to check that there are “no smoking” signs on public transports when examining fitness certificates.

Strict action will be taken if “no smoking” signs are not found on transports, according to a press release.

On September 7 this year, the BRTA organized a meeting with the assistance of Health Sector, Dhaka Ahsania Mission and Campaign for Tobacco-Free Kids at the conference room of the BRTA headquarters. The meeting was organized to disseminate baseline survey findings on compliance with Tobacco Control Law on public transports in Dhaka city. 

BRTA Chairman and Additional Secretary Noor Mohammad Mazumdar was the chief guest at the meeting.

The cross-sectional survey was carried out in October 2019 on 22 routes in Dhaka. A total 417 non-air-conditioned public buses were observed.

The survey found 91.3% of bus drivers and helpers smoked on the bus, even though the Tobacco Control Law explicitly states that public transports should be kept smoke free. As a result, a major recommendation of the survey was to not provide fitness certificate for public transports that did not have no smoking signs.

Source Article

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IAEA and French Society of Nuclear Medicine Sign Practical Arrangements to Promote Collaboration in Nuclear Medicine

The PAs provide a framework for collaboration in the area of capacity building for nuclear medicine and molecular imaging, or any allied disciplines, particularly for professionals from French-speaking countries. (Photo: D. Calma/IAEA)

The finalization and signing of these PAs are the latest development in a shared history of successful collaboration between the Agency and the SFMN which stretches back more than a decade.

In recent years the SFMN has invited IAEA experts to participate in its Annual Meetings and helped to host and place IAEA fellows into clinical and scientific research centres across France. In particular, the SFMN trained five African fellows in 2017, through the National Institute for Nuclear Science and Technology (INSTN) platform.

Additionally, the SFMN has supported the IAEA’s technical cooperation programme through the identification of French-speaking experts and cost-free experts, who in turn have supported Africa Member States as they draft and subsequently adopt clinical protocols for expanding the scope of nuclear medicine services and capabilities.

The Practical Arrangements will provide new opportunities to not only strengthen nuclear medicine capacities in the region, but to establish new collaborative avenues in other, related support areas for nuclear medicine, such as mentorship, networking, building remote or virtual training systems, the use and development of software platforms and data management.

Source Article

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Philips and Marienhospital Stuttgart sign 10-year strategic partnership to improve patient care and efficiency

Marienhospital Stuttgart

October 21, 2020

  • Long-term agreement guarantees access to state-of-the-art solutions, controls costs, and ensures security of future investment

  • Fully-integrated approach deploying Philips’ digital healthcare solutions across multiple departments to enhance the experience of Marienhospital Stuttgart’s patient and staff

Amsterdam, the Netherlands and Stuttgart, Germany – Royal Philips (NYSE: PHG, AEX: PHIA), a global leader in health technology, and Marienhospital Stuttgart (Germany) today signed a 10-year strategic partnership agreement to expand world-class medicine at the hospital and provide integrated patient care. The project will include renewal and ongoing development of the hospital’s diagnostic imaging equipment and associated IT systems, digitization of its pathology department, and enhancement of the hospital’s emergency medicine capabilities.

Rather than treating each of these improvement areas as a separate exercise, Philips and Marienhospital Stuttgart will integrate them into connected patient care and optimized efficiency solutions. This will involve analysis of the hospital’s current treatment structures and pathways to enhance the overall quality of the hospital’s structures, processes and results, while also identifying potential cost savings. By jointly developing needs-based technology solutions, Marienhospital Stuttgart will be able to better plan its costs and ensure investment security in all areas.

“Due to the long-term nature of our partnership with Philips, our hospital will not only actively participate in future technological advances in healthcare, but also become a leader,” said Markus Mord, Managing Director of Marienhospital Stuttgart. “It will enable us to offer our patients diagnostic and therapeutic procedures that consistently meet the latest standards. We live medicine and always focus on the well-being of our patients.”

“As a solution provider, we specialize in partnering with our customers to provide integrated care concepts that enhance treatment pathways for their patients,” said Peter Vullinghs, Managing Director Philips DACH. “With new, highly innovative approaches, we will help to enhance the quality of medical care for the benefit of the patient across the board. We look forward to many years of mutual cooperation with Marienhospital Stuttgart.”

Reliable diagnosis through digital pathology
A core element of the collaboration is redesign of the hospital’s pathology department workflow, replacing conventional microscopes and glass slides with Philips’ high-performance digital pathology slide scanners and computer workstations. This will allow slide images to be managed, displayed, analyzed and discussed with clinical colleagues – for example, during tumor boards for the diagnosis and treatment of cancers. The ability to share slide images will also enable virtual consultations with experts from other hospitals. Competence networks like this combine the experience of doctors working in the clinic with the knowledge of their research colleagues, speeding up right-first-time diagnosis and the initiation of therapy.

Radiology for current and future needs
Reflecting the holistic nature of the partnership model, Philips will also help to analyze and redefine Marienhospital Stuttgart’s radiology procedures, processes and IT systems, as well as coordinating equipment renewal and expansion. Under the terms of the agreement, Philips will be responsible for the procurement, installation, maintenance (including updates and upgrades) and servicing of all large radiology equipment, with

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VoxNeuro and The Canadian Football League Alumni Association Sign Collaboration Agreement

CFLAA Will Offer VoxNeuro’s Cognitive Health Assessments™ to Its Members

VoxNeuro and the Canadian Football League Alumni Association (CFLAA) are joining forces to offer objective cognitive assessment to CFLAA members, including Canadian football players, former CFL players, and other communities of interest. Through the partnership, these groups will also raise awareness of long term impacts of head trauma, like concussion. For ageing Canadians who have experienced head-trauma throughout their lives, a growing concern is understanding its relationship with cognitive decline.

This press release features multimedia. View the full release here: https://www.businesswire.com/news/home/20201019005188/en/

Legends Luncheon with Canadian Football League Alumni Association members. Courtesy of the CFLAA.

Under the terms of the agreement, VoxNeuro and the CFLAA will collaborate to share the message that long-term effects of head-trauma, from concussion and sub-concussive blows, are prevalent, and not exclusive to athletes who have dedicated their lives to playing impact or high-risk sports. Brain injuries can happen to anyone and each injury is unique – meaning they need to be assessed and treated accordingly.

“We are excited about our collaboration with VoxNeuro. The CFLAA is committed to provide health and wellness support to our members and to the community we serve. We can only do that by aligning with like minded partners. VoxNeuro and its team are such a partner.” – Leo Ezerins, Executive Director and Founder of CFLAA

The CFLAA and VoxNeuro will introduce a significant new neurotechnology to support the health of the CFLAA’s members. The neurotechnology, which assesses cognitive function in an easily accessible clinical setting, will give guidance to providing a solution to any cognitive deficiencies the CFLAA members are experiencing.

This partnership and neurotechnology have a historical tie – VoxNeuro was founded following a breakthrough study of ex-CFL players that used the neurotechnology VoxNeuro has since advanced and made clinically available, called Cognitive Health Assessments™.

VoxNeuro’s Cognitive Health Assessments™ combine imaging and functional tests, drawing on strengths from the most trusted brain assessments used clinically today. The data provided in a patient report differentiates between true cognitive decline and perceived decline due to symptoms caused by situational factors, such as stress, general fatigue or mood.

The ability to make these differentiations is massively impactful for this patient population who are uncertain about the health of their brain, and long-term impacts they may be experiencing from historical injuries. Regardless of the time post injury, the reports help healthcare professionals create targeted plans specific to a patient’s needs and track their performance over time.

VoxNeuro’s technology is the only cognitive assessment in the world today that uses objective, quantifiable neurophysiological data to inform healthcare providers & patients with the specifics of various cognitive brain functions, such as:

  • Executive Function

  • Memory

  • Information Processing

  • Concentration

  • Attention

  • Language Comprehension

The awareness campaign will involve various speaking engagements, events and collaborations with other not-for-profit organizations focused on brain health that both groups actively collaborate with, following the mission to improve brain health across Canada.

“Many CFLAA members have experienced numerous concussive and sub-concussive blows

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The Clearest Sign of Mental Health

Am I mentally ill, could be the question? Every healthy person learns to ask such a question, as is the paradox that is health and ill-health.

Now, let's be crystal clear about what this paradox is about. Let me use myself as an example. The times I have been most unhealthy mentally, emotionally, spiritually, I have lacked something very important – something critical for health. I lacked the capacity to see that I was healthy, and perhaps others knew it. I'm sure they did. I may have suspected something was wrong, but I would not at that time be able to pinpoint it. Eventually I might, and when I did, I would be on the cusp of recovery.

What is the clearest sign of mental health?

Insight.

It's like being in mental health inpatient facility. The main indicator psychiatrists are looking for. Can the person perceive reality? Are they delusional? Is there grandeur? Of course, the purpose for admitting people to these hospitals is to give them time and treatment to come back to reality – to receive insight.

It's a scary individual that does not have insight. Yet, the narcissist is one who seems fine – until you get close to them – but has a major lack of insight. They cannot see a single fault within themselves. And they may only ultimately agree they have something to change when they see there is some advantage coming to them for appearing humble.

Now, this is dangerous; to see yourself as unequivocally superior to others is bad for everyone. You cannot be corrected when you need to be, and others are not acknowledged for the goodness and attributes they have.

The person who has insight, however, sees the faults inside themselves, and they have copious humility to be able to see the wrong, the error, the mistakes they make; that we all make from time to time. They're not fearful of exposure because they see what is wrong and they see that it is straightforward to attend to it and fix it.

There's the paradox in all its glory: the one who thinks they're perfect is unimaginably dangerously imperfect, because they cannot see their fault, yet the one who sees their imperfections might as well be perfect, for human intents and purposes.

If you want to know if you're healthy, do you have the capacity for honesty?

Can you see what you need to be able to see? Not just for yourself, but for others, too.

Now, we can see that there are maladies of anxiety and depression that express themselves in many ways, but do not manifest in a lack of honesty. Comparatively, mental health is less of an issue, even if there is a lot of pain the person must wrestle with. This is not to say that their mental ill-health is any less important. Indeed, many times people can suffer mental ill-health because someone close to them has had narcissistic impact on them.

People who suffer depression …

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