Campaign for oncology drugs for poorer countries

I've mentioned previously Inspire2Live and their call to improve access to oncology medicines. Today we launch a new campaign to improve access to essential drugs by poorer countries Below I attach the press release which includes the inspiring Barbara Moss sharing her own experiences in the UK - I was fortunate to meet her in Gloucester a couple of years ago.

Inspire2Live establishes an international initiative to provide access to essential cancer drugs for Lower Middle Income Countries (LMICs) Inspire2Live (I2L), the international patient advocacy organisation, is leading an initiative, together with five of the world’s top cancer scientists as advisers, to enable patients in poorer countries to receive essential and innovative cancer drugs that they cannot currently access. This movement is gaining the interest and help of several existing international organisations who know how to deliver this. Commonly, LMIC patients are diagnosed at a late stage of their disease when their cancer is most aggressive and with no pain relief available.

Professor Ifeoma Okoye, from Nigeria, said: “Every day, I watch patients walk into our cancer centres with more fear of the cost than of the disease. The burden of out-of-pocket expenses for chemotherapy, imaging, and pain relief crushes families and robs them of dignity. The effort by Inspire2Live to democratize access to essential oncology medicines is a necessary disruption to a broken system. We must move from global empathy to equitable action. Affordable cancer drugs are not charity—they are a human right.”

At I2L, we have the support of 30 members from LMIC countries1. We visit, meet, and witness the endless struggle of people with just a few hospitals trying to cover the needs of an entire country and no access to essential cancer medicines. I2L feels compelled to act to address this global inequality. Barbara Moss from Worcester UK, a member of I2L, reflects on her experience in 2006, diagnosed with Stage IV colon cancer and given a prognosis of three months: “I was refused new treatments through the NHS because they were expensive. If my family had not
paid for the biological drug, I would certainly have died. The drug shrank my tumours sufficiently to allow surgical resection. Eighteen years on, I am so grateful to be here for my family. I want others to have the same chance that I had.”

The World Health Organisation (WHO) updates its essential medicines list biennially. There are 83 essential medicines for cancer, of which 13 are patented. Cancer drugs are generally not available in Africa, but could be made available, with no huge financial loss to the pharmaceutical industry, as was done before for HIV medicines. I2L believes that countries could be allowed to manufacture generics, even though drugs are still under patent, keeping within stringent safety regulations.

Pharmaceutical companies have to cover costs of research and failures. However, after distribution is complete in high-income countries, costs for excess production could be reduced by 90% for LMICs, following a similar process as for HIV treatment. Inspire2Live has consulted with itsinternational membership and found that this can be done. Not only will patients benefit, so will industry. Firstly, they are rewarded by scoring higher on the indexes of Corporate Social Responsibility without losing revenue, as they are currently not selling drugs to LMICs. Their 1additional expense is for registration, an insignificant cost. Of real significance, they would deliver the true value of their science: to drive innovation and save lives globally.

We believe that it is inhumane to allow people to suffer and die when there is a known way of
preventing this. We can save lives.

The I2L initiative has the powerful backing of:
• Prof. Mark Lawler, Professor of Digital Health, Queen’s University Belfast.
• Prof. Richard Sullivan, Director, Institute for Cancer Policy and Co-Director, Centre for Conflict
and Health Research, King’s College London, U.K.
• Prof. Carin Uyl-de-Groot, Professor of Health Technology Assessment, Erasmus University
Rotterdam, The Netherlands
• Dr. Wilbert Bannenberg, Founder and Chair, Pharmaceutical Accountability Foundation.
• Prof. Emeritus Ifeoma J. Okoye, Nigeria, Professor of Radiology at the College of Medicine,
University of Nigeria, Nsukka

Professor Carin Uyl-de-Groot said, ‘With cancer incidence rising rapidly in low- and middle-income countries, access to lifesaving and life-expanding medicines must be a global priority. We need a system that not only drives pharmaceutical innovation but also ensures that patients everywhere—regardless of income—can benefit from it.’

Professor Mark Lawler said, ‘How can we stand by and allow people to die needlessly, when a known cure is available? Patients in LMICs have no means of accessing vital treatment. Why do we accept that 80% of the world's population have access to only 20% of its medicine? With so much funding for health being withdrawn from LMICs right now, due to the inhumane actions of the new US administration, in contrast to President George Bush’s successful PEPFAR2, it is imperative that we act now, otherwise many more lives will be lost.’

Our Call to Action stems from evidence gained directly through I2L members in LMICs. A survey conducted by I2L details medicines that are most needed in the hospitals of our members. If these medicines were available, thousands of lives could be saved. We call on governments, industry, and our collective humanity to recognise that there is a way to provide cancer treatments and pain relief to LMICs and save lives.

Peter Kapitein, founder of Inspire2Live, said, ‘We have the assistance of international organizations, global expertise and our feet firmly on the ground in so many countries in every continent. We are human. By nature, we should also be humane. Why shouldn’t we save lives?’
2

Notes for Editor:
Inspire2Live (I2L) is the patient’s voice in cancer. The organisation creates more options for a life of
quality around cancer globally, faster. They connect patients, physicians, researchers, government,
insurance companies and the industry to initiate and develop projects for the benefit of the patient.
https://inspire2live.org

Reference Notes:

1. Argentina

Armenia

We have 30 LMIC country members:

Brazil

Bulgaria

Caribbean (consists of 16 countries)

Chile

Indonesia

Iran

Jordan

Kenya

Lebanon

Lithuania

Costa Rica

Croatia

Nigeria

Pakistan

Cuba

Philippines

Egypt

Gabon

Romania

Senegal

Ghana

South Africa

Guinea

Tanzania

Hungaria

India

Ukraine

Uzbekistan

2. PEPFAR President’s Emergency Plan for AIDA Relief

Among the organisations we consult:

3. The Pharmaceutical Accountability Foundation (PAF) serves the public interest by striving

to ensure that medicines and medical technologies are made available in a socially

responsible and sustainable manner. We attach a value to fair pricing and distribution in

accordance with European and international legal standards, and therefore take action to

combat unjustifiable price gouging by companies abusing market monopolies. We seek to

achieve our objectives through the provision of advice and information to governments,

stakeholders professionals and the general public. If that does not help, we achieve our

objectives through the possible legal action around excessively high priced medicines. Our

Articles of Association (in Dutch) can be found here.

Contact information for Media Enquiries:

Peter Kapitein, Founder of Inspire2Live

Email: peter.kapitein@inspire2live.org

Phone number: +31 6 52 49 60 99

4 

New prostate cancer tests

Less Grey Imaging

I'm signed up to Prostate Cancer Research and they produce a great magazine with the latest research often funded by donations to them. At the moment the PSA remains the best test despite it's unreliability, however a couple of things stood out in the recent issue:

'Less Grey Imaging'; as we know the PSA test is not reliable. MRI misses 20% of cancers and a whopping six in ten men undergo unnecessary procedures. This new technology offers us up to a 20-fold increase in resolution compared to mpMRI, which provides a grey, difficult-to-read image.

It works by injecting a commonly used contrast agent into a vein that contains millions of tiny and harmless microbubbles that travel through the patient’s bloodstream to the prostate. Super resolution ultrasound imaging is then used to track these microbubbles as they flow inside the prostate. Due to the altered blood flow in cancerous tissue, the image highlights previously unseen tumours, enabling earlier diagnosis. 94% of tumours are correctly identified and the technology is cheaper, faster and less claustrophobic than  an MRI scan. It is now going to a Phase II trial to take it forward. It cannot come soon enough! 

See more including a short video re Less Grey Imaging here. You can support research into this here.

New 'Spit test'; earlier this year researchers from The Institute of Cancer Research in London made headlines by announcing that their at-home spit test could spot which men are most at risk of prostate cancer. The test doesn't look for signs of prostate cancer in the body but rather looks at changes to a man's DNA that increase risks of prostate cancer.  The test is not commercially available yet but is now going to a large £42m trial to see if this genetic approach works at scale.

PSE test: a couple of years ago the University of East Anglia announced their PSE test was 92% accurate at detecting the disease. The test is a combination of the existing PSA blood test and another blood test they developed in collaboration with Oxford Biodynamics, called the EpiSwitch test. This looks at how DNA is folded in specific immune cells which might provide tell-tale signs of prostate cancer developing in the body. The combination, which they called the Prostate Screening EpiSwitch test (PSE test). It correctly identified men who didn't have prostate cancer 94% of the time.

Urine test; another recent development is a new urine test that measures 18 genes associated with prostate cancer. It provides higher accuracy for detecting clinically significant cancers than PSA and other existing biomarker tests, according to a study published last year in JAMA Oncology.  This means less unnecessary invasive biopsies.

There are various other tests being developed including one using AI to look at 100 biological markers in blood and urine samples, but as Prostate Cancer UK caution “many of these tests are still very early in their development and require robust testing”. 

An answer to rising costs and chronic illness

Our health services are at and in many places beyond breaking point. While we can hope the new government will restore some of the funding it is clear that health needs and costs are continuing to rise. In the next 15 years those living with a major illness are forecast to rise by 2.5 million to 9.1 million (i). 

So what can tackle rising costs and massively rising ill-health?

In this blog I will look at part of the answer that is already being tried with some wonderful results in terms of cutting costs and improved health outcomes. Perhaps the best articulation of the approach is the book “The Community Cure. Transforming Health Outcomes Together” by James Maskell (ii).

Maskell notes that we are facing a profound and worsening epidemic of loneliness and this is exacerbating chronic disease. He cites many examples of isolation as a social determinant of health including a 2017 questionnaire-based study where Medicare recipients older than 50, who ultimately were defined as “lonely”, experienced death rates 31% higher than their peers who did not self-identify as socially isolated. 

This research is not new - there is loads showing a range of health conditions associated with loneliness and social isolation, including heart disease and stroke, type 2 diabetes, rheumatoid arthritis and cancer. Even recovery following heart surgery can be compromised by isolation.

In the book Maskell argues that to counter this we should turn to group medical appointments; a supportive community provides the space to help develop healthy behaviors - a key to reversing chronic illness. This also can ‘shift our collective focus to prevention and root cause resolution’.

The book looks at the many ways group medical visits are being used - and the powerful evidence of them as a treatment for the loneliness epidemic. 

One of the examples Maskell looks at is the work of Dr Jeffrey Geller’s. This doctor found that patients who lacked support systems accessed medical care at a greater rate, so he decided to create a support system by forming group visits with a cohort of diabetes patients. Geller notes “People’s loneliness improved, people’s depression improved, they lost weight … blood pressure reduced by 5-10 points, and hemoglobin A1C also reduced”. 

I’ve personally seen the benefits of a group of people coming together and supporting each other - the peer-led Wigwam cancer support groups are a great example. See my blog post on this; ‘What makes the biggest difference to our healing’: https://yestolife.org.uk/what-can-make-the-biggest-difference-to-our-healing/

I’ve also seen benefits accruing from groups like the Cancer Exercise group at Stratford Park Leisure Centre supported by Stroud District Council. I believe there is huge potential for more of this intentional coming together.

One obvious possibility might be the one-off prehab talk now being run by local cancer services. Could that be expanded into a series of group activities looking more at nutrition, exercise, sleep, stress and more? This of course doesn’t mean there will not be some individual appointments but the bulk of issues can be raised in the groups. One of the findings into researching this approach showed that folk didn’t have time to raise key stuff in an individual appointment but there was time in the groups. Furthermore some patients were more shy to raise issues and found it useful that others in the group asked those questions.

‘Confidentiality’ I hear some folks cry. Yes any group work needs to consider this issue, Maskell has a section in his book on this, but it seems clear to me that group visits don’t destroy a patients privacy. What they do offer is a safe space for folks to be vulnerable and this can be a key part in healing.

Maskell writes: “We need more connection, more empathy, more social connectivity, and less loneliness, less social isolation. In a culture and society that emphases and prioritises privacy, we’ve inadvertently contributing to the very epidemic we’re trying to solve."

Maskell provides many resources for those interested in starting their own group visits, primarily through his website, “Evolution of Medicine.” I also know there are many skilled practitioners within our NHS who no doubt already have the skills to develop this approach.

With families and communities no longer meeting our needs we have seen what Maskell calls ‘total commodification’. We need ever more money to pay for counselling, babysitters, care and more - these were once shared by the community itself. It seems we now only look to the market or government for solutions. It’s time for a refocus…..group appointments are a way whose time has come. It would be great to see if there are opportunities to expand these ideas in Gloucestershire?

Update 10.01.25: Just heard this useful podcast re James Maskell: https://creators.spotify.com/pod/show/robin-daly6/episodes/James-Maskell--Diana-Lindsay-e2sjofc

There are many other podcasts with James Maskell on his website and online. Here are a couple:

Dr Chatterjee interview: https://drchatterjee.com/the-secret-to-radically-improving-your-health-that-nobodys-talking-about-with-james-maskell/

Oncologist Nasha Winter's interview: https://www.youtube.com/watch?v=HJanBC_xi3o&t=1s

Here are a couple more of my blogs looking at the impact of social support and community:

See blog about building a community of Wigwam Cancer Support Groups:

https://myunexpectedguide.blogspot.com/2021/05/building-community-of-peer-led-support.html

See blog on social prescribing and anti-social prescribing: 

https://myunexpectedguide.blogspot.com/2019/12/social-prescribing-for-people-living.html

Notes:

1. https://www.health.org.uk/reports-and-analysis/reports/health-in-2040-projected-patterns-of-illness-in-england
2. https://thecommunitycure.com/getyourcopy

Change NHS: a look at submissions

In November 2024 the UK public were invited by Health & Social Care Secretary, Wes Streeting, to contribute ideas to rescue the NHS; “Our NHS is broken, but not beaten. Together we can fix it.” See details here: https://change.nhs.uk/en-GB/

Amazingly the previous government left Cancer care out of its 10-year plan altogether. Given the scale of the current statistics this was surely deeply misjudged. In this blog I cover the excellent response by Yes to Life and note some other key points.

Robin Daly, Founder and Chair of Yes to Life, writes: "This was the introduction to Change NHS, a once-in-a-lifetime opportunity to have our say, that we at Yes to Life immediately knew we had to respond to. Although there are no certainties as to what effect this unprecedented public input will have, we felt the need to express clearly the changes we would like to see, and to argue the case that these will provide solutions to many of the key ills affecting UK healthcare in the twenty-first century".

Yes to Life have now made their submission public. It relates strongly to the Charter for Oncology that Yes to Life published earlier this year. This Charter sets out "the ethos for an entirely new relationship between those delivering and those in need of healthcare, one that opens up unlimited potential for rapid improvements in resources, methods and most importantly results, as well as approaches to prevention and health promotion that are currently totally absent from mainstream healthcare".

Don't forget to sign the petition for the Charter: https://www.change.org/p/implement-the-yes-to-life-charter-for-oncology-in-all-nhs-cancer-units

The Yes to Life submission by Robin Daly and Dr Penny Kechagioglou, NHS Oncologist and Lead Advisor to Yes to Life on Integrative Oncology, can be read at: https://yestolife.org.uk/wp-content/uploads/2024/12/Change-NHS-Booklet-1.pdf

The Charter is a key element of the submission but also there are other key points that they make in more detail than I note here - these include:

- The need for a deep cultural shift towards patient-centred care (not lip service) - it has been enshrined in the NHS Charter but is still barely discernible. Similarly we need a return to clinical judgement as a key element of evidence-based decisions.

- Integrative Oncology as a model of care is well developed in other countries, cost-effective and has better clinical outcomes; lifestyle changes are key yet the NHS is ill-equipped to deliver

- Prevention is ultimately where solutions lie

- More collaboration both within the NHS and with external providers

- More than half of Cancer patients adopt lifestyle or complementary approaches independently but are unsupported during and after treatment. Clinicians don't need to be experts but do need to know facts when it comes to its potential. Training key to help with changes.

- Improvements to data

The Patients Association

Many organisations and individuals are submitting responses  to Change NHS. One of the others I've read is by the Patients Association - see here. Their submission also strongly calls for the patient voice to be heard. It is full of detail and is informed by 290 responses to a call they made for comments. They found that the respondents to their survey were generally in favour of the three shifts proposed by the Government – shifting from hospitals to the community; from analogue to digital; and from sickness to prevention. There was also an understanding about the challenges that may arise from implementing these shifts. 

Among the key points are calls for shorter waiting times, integrated digital health records, better prevention strategies, and equitable care for underserved groups. Workforce recruitment and retention, alongside stronger patient partnerships, were also seen as critical to success.

One key issues that impacts on the NHS that needs emphasising is around how social determinants of health impact patients. This includes external factors that contribute to a patient’s health and wellbeing, like their income level, if they have access to safe housing, and whether they come from a minoritised community, like being Black or LGBTQ+. This is huge and something this blog has touched on in the past. Again as we've argued in the past part of the answers involve really involving patients.

Lastly here's a link to World Cancer Research Funds submission which also has some good stuff: https://www.wcrf.org/wp-content/uploads/2024/12/Comments-10-year-health-plan-England-Dec-2024.pdf

Universal screening for prostate cancer?

Seven years ago I blogged here about whether a PSA test should be standard for over 50s - see here - at that time there were strong reasons for and against testing. However the evidence is growing for 'a targeted national prostate cancer screening programme'....

In the most recent Newsletter from Prostate Cancer Research (PCR) (pictured) they cover a report in which they look at the crucial issue of over diagnosis and over treatment - a huge issue - their argument is that with improvements in MRI (mpMRI) and guided transperineal biopsies the picture is very different. There is also more acceptance of active surveillance rather than going straight to invasive treatments.

We know the current situation does not work: "The existing “informed choice” system for requesting testing places the onus on men to understand their risk and actively seek testing. This system is both ineffective and inefficient and contributes to the fact that men from high-risk groups, particularly Black men, are more likely to be diagnosed late and are more than twice as likely to die from this disease."

Deloitte's were commissioned to look at a cost-benefit analysis for change. This indicates that the introduction of a targeted national prostate cancer screening programme for high-risk groups using the current pathway could deliver:

• Around 650 earlier diagnoses annually for men with a family history of prostate cancer aged 45-69 and in the region of 170 for Black men aged 45-69.

• For these groups, almost 230 men with a family history of prostate cancer per year being spared a stage 4 diagnosis, when prostate cancer becomes incurable. For Black men, 60 avoided stage 4 diagnoses.

• Up to £14,000 net socio-economic benefit for every high-risk man diagnosed.

This would be achieved using current technologies and pathways, and by targeting men from high-risk groups:  Black men and those with a family history of prostate cancer (including those with BRCA1/2 mutations).

Here are the headline figures noted in their newsletter:

The report concludes that with the introduction of an effective 'reflex test' between a PSA and MRI in the critical pathway, a universal screening programme for men aged 50-69 could save lives and benefit the country economically. This would also move the UK from being one of the worst OECD performers on prostate cancer to being one of the best.

PCR are taking their report forward and meeting with Members of Parliament to put the case. It is also interesting to note in a further landmark report presenting evidence for change the three key areas to go forward. See here: https://www.prostate-cancer-research.org.uk/PFYP/

Here they are taken directly from their report:

1. Introduce targeted prostate cancer screening for high-risk groups as soon as possible
Right now, we need to optimise screening using a PSA test, focusing on high-risk groups – Black men, those with a family history, and those with a BRCA1 or BRCA2 mutation. This approach, prioritising those at highest risk of prostate cancer, has been shown in our report to provide economic benefits, while requiring the lowest level of health system change.
2. Trial new diagnostic tests in clinical practice
Alongside more targeted PSA testing, we need to focus on getting new diagnostic technologies into trial (e.g. reflex tests), to gather real-world evidence and understand the benefit in diverse populations. Once the value of this has been demonstrated, we should expand the screening programme to cover the general population using a test with greater accuracy, as this will realise the greatest economic benefits.
3. Adopt AI-driven tech to enhance patient outcomes and efficiencies
To further improve patient outcomes and the economic benefits of earlier detection, we need to integrate AI technology into the NHS. We need to leverage its potential to improve the accuracy and reliability of screening, avoiding the need for unnecessary biopsies, while also boosting operational efficiencies. By adopting AI-driven technologies in imaging, we can streamline processes, reduce diagnostic errors and ensure resources are allocated more effectively.

Thank you PCR!

Cancer and the New Biology of Water; Deuterium, Quinton and more

There are so many ways of looking at cancer - in recent blogs I’ve been writing about Mark Lintern’s view - see more here and here. Our health services are still focusing on removing (surgery), burning out (radiation), or poisoning (chemotherapy), yet what we have learnt about cancer shows there is so much more we can be doing.

In Cancer and the New Biology of Water, Thomas Cowan, MD, argues similar to Mark Lintern that this failure was inevitable because “the oncogene theory is incorrect—or at least incomplete—and based on a flawed concept of biology in which DNA controls our cellular function and therefore our health”. Indeed the evidence is overwhelming regarding the oncogene theory.

Dr. Cowan sees the root cause is metabolic dysfunction that deteriorates the structured water that forms the basis of cytoplasmic—and therefore, cellular—health. I am not sure how this fit’s with Marks work but I found his ideas about ‘structured water’ and it’s role in cellular health fascinating.

In the book, Dr. Cowan writes about the four states of water, three that we know well are ice, liquid, and steam. The one that I had not come across he defines as “gel.” This gel is the body’s ‘life force’ within all our cells and this determines how healthy we are. He argues that by restoring this intracellular gel we have a key to treating cancer more effectively.

In the book Dr. Cowan reviews quite a number of promising treatments and calls for research on them - these include many that I’ve come across like the ketogenic diet, mushrooms, Gerson, Vitamin C, reducing electromagnetic frequencies, mistletoe, saunas and more. However some I had not come across. What was interesting was that he explained in the light of his theory how these treatments might work with cancer.

Quinton Plasma

One of those treatments I hadn’t come across was Quinton Plasma or Quinton isotonic seawater. He quotes the work of René Quinton, a biologist who lived in France (1867 to 1925), who noted that our blood serum has the same mineral composition as seawater. When we eat processed salt, we create an imbalance that causes ailments. Quinton learned how to refine ocean water to create a plasma that was used to treat disease during his lifetime. Dr. Cowan feels this marine plasma is a key to restoring balance in the human body.

Deuterium-depleted water

Another factor Dr. Cowan identifies that decreases health is deuterium in the water we drink. He argues deuterium affects energy pathways in the cells and can cause errors in our DNA. As we age, greater amounts of deuterium accumulate in our bodies, leading to an unhealthy imbalance. This reminded me of some reading I did a couple of years ago but didn’t follow up….

In 2022 I was sent a copy of the book ‘Deuterium Depletion – A New Way in Curing Cancer and Preserving Health’ by Gábor Somlyai; it appeared in English in February 2022 and I was asked to review. This was a fascinating book looking at how deuterium depletion inhibits the growth of cancer cells in the body. However most studies into deuterium, although very positive, are still on animals - and purchasing such water is sadly not a cheap option so I’ve not pursued further - but it is certainly one to watch!

For a good overview see this hour long podcast (if you can bear the repeated adverts) from Ricci Flow looking at: ‘Deuterium Depletion & Defeating Cancer with Gábor Somlyai’: https://youtu.be/imwnUK4XYbM?feature=shared

Then here is Somlyai talking about reducing metastases: https://youtu.be/tl8UF8snJN8?feature=shared

Here is some of the research that backed up Somlyai’s work: https://www.researchgate.net/profile/Gabor-Somlyai

Many of these treatments Dr Cowan discusses are crying out for research. I remember reading “Outsmart your cancer. Alternative Non-Toxic Treatments That Work” by Tanya Harter Pierce (2009) which looks at a whole host of other treatments like Rife, apricot kernels, Gerson, Hoxsey and Essiac that have been used over years. Some of the stories are fascinating - but they just don’t have the peer reviewed science to support them, although the many case studies may well be enough to persuade some to try. I think the book should carry a warning that some of those treatments could well be dangerous. Having said that some listed seem harmless and some may well be supportive to someone with cancer. It is a huge challenge negotiating all the hundreds of claims that folk make around cancer. 

For me many of these treatments need more evidence before I would embark on them - but at the same time I do not judge those who may well want to try what some consider to be wacky! Indeed I have in the past and may well do again. Let us not forget that many conventional treatments are not wholly safe with massive side-effects and too often mainstream health professionals are too ready to dismiss possible ways forward. It was probably less than 20 years ago that the idea of a microbiome was dismissed yet now we know the huge and key role it plays. As always check out any treatment with your medical team.

Here’s Dr Cowan in a 45 minute podcast that looks at many of the issues he raises in his book: https://youtu.be/Vecoxzvi1ok?feature=shared