Visiting Oxford Nanopore Technologies

In April 2015 I visited the Wired Health conference in London, I write the following about a product I saw called the MinION:

Clive G Brown, CTO of Nanopore Technologies, spoke about how his company’s USB stick-sized DNA sequencer will enable an “internet of living things”. He spoke of how he could see consumers using this medical device and having results go to the cloud for diagnosis. Old DNA sequencing machines cost hundreds of thousands of pounds and are huge, this device costs just £650. Clive has a vision for immediate results on a device that can be run anywhere, he used an analogy of building it into a toothbrush so your biology can be sequenced every morning and monitored for changes.

A device like this could be revolutionary in the field of testing epidemics, environmental monitoring and infectious disease control. It’s predictive and preemptive. It could allow general self quantification in the same way diabetes patients track their blood sugar. For any leukaemia patient, like me, who has to have regular blood tests or bone marrow biopsies, several narratives converged for me at this particular moment in time.

Imagine a device that meant we wouldn’t have to visit our consultant regularly but still allowed us to do regular blood tests. It would pick issues up sooner, share results, save the NHS lots of money and do away with bone marrow biopsies. Imagine a device that could track chromosome abnormalities and check immediately for the philadelphia chromosome. The device you see me holding in my hand could be the key to unlocking all of that. This could also be the key to mass screening and therefore the saving of many lives. No pressure there then.

Clive is clearly a man who wants to keep expectations in check but I can’t help but get excited. I spoke to the team during one of the breaks and we are going to talk. This is one to watch!

Last week I was invited to the Nanpore offices in Oxford to give a talk to their staff about self-quantification. The talk ultimately ended up being about the life of a CML patient and the things we go through on a daily basis. It was an emotional rollercoaster and I felt the 150-strong audience were with me every single step. My talks are hard work, I don’t spare any detail but I try and look at things in a light-hearted way. I’m happy to share in order to get people to understand. Understand the patient and the process becomes simple.

After the talk I was given a tour of the offices and laboratories. It’s an incredible organisation with a talented staff who care deeply about their work. It was very humbling to meet so many good people. The CEO, Dr Gordon Sanghera, is driven, intense and inspirational and made me feel very welcome.

This won’t be last you’ll hear from me about Nanopore, I have high hopes from them in 2016. No one ever does something that changes the World because it is easy……they do it to make a difference. I hope I was able to show them enough to see what that difference will make.    Kris Griffin

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World CML Day 2015

9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukaemia (CML).
Since 2008, patient organisations around the world have initiated events and projects on “CML Awareness Day” on September 22 to raise awareness of the needs of patients living with CML. Since 2011, the worldwide community unites to celebrate “World CML Day” on that date.  – from CML Advocates Network

Sitting down to write a post for World CML Day, even if there are only a few hours left, is always a daunting prospect. Ultimately it’s not just one day for patients, but I understand the sentiment. For patients like Khalid Younis it brings more attention to his cause to get the drug (ponatinib) he deserves – you can read his story here.

So, when it came to writing I was in danger of either repeating myself or simply bashing governments and organisations again. PING. An email arrives. It’s a blog post from my good friend Greg Stephens, the executive director of the National CML Society in the US. Greg is one of the good guys, a really good guy. That’s the thing about CML, it brings people together. I would be a poorer person for not knowing Greg. His fiery determination, humility and wit makes for great company which come in handy when the sensible people have gone to bed at conference.

His blog post was a complete inspiration and I asked him if I could post it here, he said yes in the most beautiful way. Here it is, he said things I wanted to say in a much better way. Cheers Greg x

Kris

Some things to ponder on World CML Day
by Greg Stephens

Today, 9/22, is a day that is known well among those of us in the CML community. It’s a day set aside for awareness activities and a time to call attention to the many challenges faced by anyone living with Chronic Myeloid Leukemia. Over the past seven years, today’s awareness initiatives have grown in scope, rising from the first CML Awareness day in Canada to a global emphasis. Right now, activities are going on around the world and key issues are being discussed. So, what are some things to consider on this day set aside as a day of awareness?

First off, it’s not for us. While we benefit from raising awareness, the true purpose for promoting blood cancer and CML awareness (year round, actually) is so the public and those who know nothing about blood cancers can learn more about this group of diseases, recognize the amazing progress that has been made through medical research, have a better understanding of the realities of blood cancer, and dispel myths and misconceptions that may exist. For those of us in the CML community, it’s an opportunity to share our “reality” – truths if you will, with friends and family, medical professionals, the makers of our treatment drugs, and countless others who need to know just how much CML impacts one’s daily life. While there is focused attention on CML, we have a great opportunity and responsibility to create awareness for those outside our community.

Here are a few things to think about:

1. Eighteen! Today, 18 people will be diagnosed with CML* in the United States. There will be 18 more tomorrow and the next day, and the next….all throughout the year.
2. For the majority of those people, their CML will be brought under control with treatment, however, a small portion will not have that experience.
3. The current costs of our CML treatment drugs are unsustainable and many, even WITH insurance coverage and other assistance, are suffering financial ruin as a result.
4. There is no “GOOD” leukemia. Did I just say “GOOD” and LEUKEMIA in the same sentence?
5. Side effects are an ever-present reality that impedes many patient’s daily lives.
6. Drug parity legislation and fair access to oral chemotherapeutic drugs at a national level is needed, now more than ever.
7. Some may be able to achieve a treatment-free remission (TFR) and go months – even years without treatment. Others will be dependent upon treatment for their lifetime.
8. Quality of life issues are widespread and more attention must be focused on addressing them.
9. Learning about CML from reputable resources and becoming knowledgeable about the disease is imperative for anyone diagnosed.
10. We aren’t “finished” with CML – we not only need curative research to continue, we need it to increase.

This list could go on for countless pages and not even begin to cover all the things our community deals with on a daily basis. You probably have a list of your own. It may seem overwhelming, but together we can bring greater awareness to these and other realities we face every day. To succeed, we must look beyond ourselves and our community and boldly speak up so that those who minimize the life with CML or know nothing about it will know the truth. Yes, great things have happened and will continue to happen for our community, but much work remains.

I hope you will join us in making a difference for anyone living with CML.

Greg

Pinterest: Chronic Myeloid Leukaemia

Just a quick update today to draw your attention to a social media thingy I’ve put together. I’ve been playing around with Pinterest. For the uninitiated Wikipedia offers a pretty good description:

Pinterest is a free website that requires registration to use. Users can upload, save, sort, and manage images—known as pins—and other media content (e.g., videos and images) through collections known as pinboards. Pinterest acts as a personalised media platform. Users can browse the content of others on the main page. Users can then save individual pins to one of their own boards using the “Pin It” button, with Pinboards typically organised by a central topic or theme. Users can personalise their experience with Pinterest by pinning items, creating boards, and interacting with other members. By doing so, the users “pin feed” displays unique, personalised results. Wikipedia

Whilst creating some boards on my profile I decided to create one specifically for Chronic Myeloid Leukaemia; this would draw the numerous graphics and information that you can find around the web on CML, together. So here it is:

https://uk.pinterest.com/krisgriffin564/chronic-myeloid-leukaemia-cml-leukemia-cancer

It only has 12 pins so far but they are pretty good and CML specific. If you have a graphic or know of one that you think would be appropriate or useful please contact me via this blog and we’ll arrange to pin it.

I hope that this becomes a useful resource, feedback is always appreciated. Thanks, Kris

What is MY PCR survey…

A survey worth spreading…Kris

Dear PCR Campaign Supporters,

As many of you know, 9/22 was World CML Day, the date that symbolically represents the genetic change of Chromosomes 9 and 22 that causes CML. This also marks the one year anniversary of the “What is MY PCR” campaign. In honor of these two events, we are excited to announce the official launch of the PCR Campaign Impact Survey!

Our goal is to gather feedback from you as campaign participants to help us measure our impact and identify areas in which we can strengthen the campaign in 2014. Your voice is critical to shaping this campaign, and we want to hear your feedback! The survey is posted on the campaign website http://www.whatismypcr.org and we encourage you to share this opportunity within your networks as well.

The survey will be open from September 2013 to December 2013. At the conclusion of the survey, we will compile the results into a report in early 2014 to be shared with you and your networks. Currently available in English, Spanish and Thai, we will continue to add translations over the next two months as we receive them from the PCR campaign partners.

We look forward to receiving your feedback. Complete the online survey now!

http://www.surveymonkey.com/s/WhatIsMyPCRImpact

Best wishes for World CML Day,
From PCR Campaign Headquarters

Cancer drugs survey

Sharing this from Leukaemia and Lymphoma Research. K

CANCER DRUGS FUND SURVEY
The Cancer Drugs Fund has been in the papers a lot recently as its future after 2014 is uncertain. Established in 2010, it provides £200m each year to enable patients with cancer in England to access drugs that are not routinely funded by their local NHS.

As the leading UK blood cancer research charity we want to ensure the needs of blood cancer patients are being heard by decision makers.

This short survey will help us gain insights into the impact of Cancer Drugs Fund on the blood cancer community and will inform our policy position on access to medicines, new treatments and clinical trials for blood cancer patients.

The Cancer Drugs Fund (CDF) applies to patients eligible for NHS services in England so the survey is therefore aimed at blood cancer patients, their carers and families, and clinicians based in England only. For more information on the Fund please visit NHS England website.

The survey is anonymous and will take no more than 5 minutes to complete.

Your input is important to us so thanks in advance for your time and help with this!

https://leukaemialymphomaresearch.org.uk/form/cancer-drugs-fund-survey

NEW CML Resource & Knowledge Centre

Trust those great people at CML Advocates Network to drop a brilliant new resource in our lap. This is well worth checking out. K

Over the next three years, CML patients in more and more countries will be facing the use of generic TKIs and copy drugs to treat CML.

To provide patient organizations with background information on this important issue which has so far been quite difficult to find, we have launched a Resource & Knowledge Center on CML generics, copy drugs and substandard drugs.

Please see new section here: http://www.cmladvocates.net/generics

It provides:

• an unofficial directory listing all CML tyrosine kinase inhibitors (TKIs) that are – to our knowledge – available to date:  http://www.cmladvocates.net/generics/cml-drugs-register
• the results of our survey on generics, copy drugs and substandard drugs in CML which was conducted by CML Advocates Network in collaboration with iCMLf in March 2013. The survey summarizes 86 responses from 55 countries – the data is also available for download.
• the webstreams of our session on CML generics and substandard drugs at “CML Horizons 2013”, which featured a presentation of the WHO, of the CML Association of Serbia and the CML Advocates Network
• an index of scientific articles on the use of generic drugs in CML treatment: http://www.cmladvocates.net/generics/generics-publications
• our blog on CML generics. (This is only available after login for members of the CML Advocates Network to keep discussions private in the community) http://www.cmladvocates.net/generics/generics-blog
• a glossary with key terms and definitions in the area of drugs and generics: http://www.cmladvocates.net/generics/glossary

We will soon complement this by a “Best Practice Toolbox” for advocacy on generics in a few weeks, which is currently under construction. The “toolbox” will provide useful advice and tools on how to address this topic as an advocacy organization when generics or copy drugs are being introduced in your country.

Finally, we would like to stress that the Resource & Knowledge Center on CML generics, copy drugs and substandard drugs is a purely patient-driven, non-commercial initiative. It has no interest to promote, or assess, any of the drugs. The only intent is to increase transparency in a confusing environment.

We hope that you will find this Resource & Knowledge Center very useful!
We are looking forward to your active participation in the blog and the new knowledge center, and are happy to receive your feedback!

Nicole, Giora and Jan
CML Advocates Network –
http://www.cmladvocates.net

More Parliamentary questions answered.

My thanks again go to Mark Garnier MP for asking these written questions for us in Parliament. It’s vitally important that we keep asking questions, forcing answers (even if we don’t like them) and giving this cause as high a profile as we can manage. These answers are recorded for posterity in Hansard and we can refer back to them any time. Hansard is the name of the printed transcripts of parliamentary debates in the Westminster system of government. It is named after Thomas Curson Hansard, an early printer and publisher of these transcripts.
Kris

22 Apr 2013 : Column 753W
Leukaemia

Mark Garnier: To ask the Secretary of State for Health (1) what steps he has taken to ensure that those diagnosed with chronic myeloid leukaemia have access to a wide range of treatment options, including Dasatinib’ [151773]

(2) what recent discussions he has had to ensure that those diagnosed with chronic myeloid leukaemia have access to a wide range of treatment options, including Dasatinib. [151774]

Norman Lamb: The Mandate to NHS England clearly states the need to improve access to treatment for people when they need it.

The National Institute for Health and Care Excellence (NICE) has issued technology appraisal guidance that recommends the drugs imatinib and nilotinib for use in the treatment of chronic myeloid leukaemia. NICE guidance does not recommend dasatinib as a clinically and cost-effective use of national health service resources.

Commissioners are under a statutory obligation to provide funding for such treatments and drugs recommended by NICE within three months of the guidance being published.

Patients have a right under the NHS Constitution to clinically appropriate drugs and treatments recommended by NICE technology appraisal guidance.

Since October 2010, the £650 million Cancer Drugs Fund has helped over 28,000 patients in England to access the drugs their clinicians believe will help them. NHS England has now taken on oversight of the fund, bringing even greater consistency to decision making.

The Secretary of State for Health, the right hon. Member for South West Surrey (Mr Hunt), has had no recent discussions about this matter.

http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm130422/text/130422w0007.htm#13042383001683

 

22 Apr 2013 : Column 735W
Cancer: Drugs

Mark Garnier: To ask the Secretary of State for Health with reference to the Cancer Drugs Fund, as announced by the NHS Commissioning Board, whether access to some treatments previously available through the fund will be restricted. [151790]

Norman Lamb: Since NHS England took on oversight of the Cancer Drugs Fund from 1 April 2013, it has published a national list of cancer drugs covered by cohort policies on its website at:

www.england.nhs.uk/wp-content/uploads/2013/03/ncdf-list.pdf

We understand that the great majority of cancer drugs previously funded by strategic health authority panels are on this cohort policy list, supporting timely and consistent access. Clinicians can apply to the national Cancer Drugs Fund for the inclusion of a drug within the approved cohort list.

Regional clinical panels will continue to consider individual patient applications where a patient is considered to be exceptional to a cohort, policy or where use under a cohort policy has not been considered due to the rarity of the condition.

http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm130422/text/130422w0006.htm#13042383001615

Medivo Launches Free Mobile App for Monitoring Chronic Myeloid Leukemia (CML)

Just wanted to highlight this. I’m not endorsing it, because I haven’t used it, but I though readers may find it interesting…

CML Monitor Provides Innovative Method for Tracking Symptoms and Monitoring BCR-ABL Lab Test Results for Physicians and People Living with CML.

Medivo Inc., a health monitoring platform that regularly connects doctors, consumers and clinical labs, announced the launch of CML Monitor, a free mobile app for people living with chronic myelogenous (or myeloid) leukemia (CML).

This new app simplifies daily life for people living with CML by providing them an innovative way to easily and accurately track BCR-ABL laboratory testing results and symptoms while delivering reports to their physicians for optimizing treatment.

CML Monitor is available for iOS and Android devices. Watch a video or download the app here. (www.medivo.com/cml/)

The app provides testing reminders and also enables people living with CML to connect with participating physicians, who receive regular patient updates to make better-informed treatment decisions. Additional features include noting questions for doctors, documenting hospitalizations, creating custom symptoms and socializing with others living with CML.

“Monitoring disease response to therapy is one of the key requests of people living with CML,” said Dr. Jason Bhan, EVP and Co-Founder of Medivo. “With this new app, Medivo is able to help consumers track their progress and also help physicians more closely monitor response to therapy and changes in condition symptoms.”

The new CML Monitor app builds upon the success Medivo has achieved with its popular GI Monitor app, the leading mobile disease monitoring application for people living with IBD, and HAE Monitor app, which allows people with hereditary angioedema to easily track symptoms and deliver reports to their physicians.

CML, also known as chronic myelogenous leukemia, is a type of cancer that begins in the blood-forming cells of the bone marrow. It can move into the blood and subsequently spread to other parts of the body. The term “myelogenous” in CML refers to the type of cells affected by this cancer, which typically affects older adults.

Source: Medivo

http://www.medicexchange.com/news-article/medivo-launches-free-mobile-app-for-monitoring-chronic-myeloid-leukemia-cml.html

Off topic: fundraising

It’s my birthday today (21st May) and what better way to launch my latest fundraising venture, now don’t groan. Of course I do it on purpose.

Turns out I’m a bit fat. No please don’t disagree…honestly…no…oh you are too kind. But seriously I need to shed some timber; a significant amount it turns out.

It appears I’m too fat to ride a horse at CentreParcs and also too fat to take a lesson in a small helicopter. Clearly both modes of transport will buckle under my enormous weight. I was a little angry to start with but I’ve since used the anger to motivate myself. The plan is to fly a helicopter and ride a horse, obviously not at the same time, neigh, unless horse is feeling particularly daring and then of course I’m up for it.

I need to lose 2 stone (28 lbs) to get down to 15.5 (217lbs)…yes, yes I’m 17.5 stone (245lbs) – WHATEVER!

So sponsor me. I’m doing it for Leukaemia Care who are a wonderful charity that supports blood cancer patients. If you didn’t know I was diagnosed with leukaemia over 5 years ago and am doing OK.

So let’s get this show on the road…I’ll have salad with that.

http://www.justgiving.com/kris-griffin

CML Horizons, Prague 2013 – Day 3

I made it to day 3 despite the best efforts of friends and colleagues trying their best to corrupt and lead me astray. Of course, I resisted on all counts. Last night we were taken around Prague on an old tram and had dinner at a wonderful old venue across town. The half hour walk back to the hotel with team-CML was welcome relief from an intense, exhausting day. It was a good chance, again, to connect with patient group leaders and pharmaceutical representatives to discuss the fish and the flesh.

Omelette for breakfast again, I’m a creature of habit. The conference was soon underway and we were straight into fascinating presentations from Katerina Machova-Polakova and Tim Hughes. I’m not sure what this says about me but it’s certainly a great way to spend a Sunday morning. Better than washing the car and mowing lawns anyway. The topic was monitoring and the advent of much more sensitive techniques. Tim Hughes seemed particularly hopeful about the Cepheid Genexpert machine which requires a tiny blood sample, patients rejoice! It is far more sensitive than the traditional technique. We also touched upon DNA sequencing which can push the boundaries of just how undetectable the patient is. This is going to help us understand just how effective stop trials are and when the best time, if at all, patients can stop treatment safely.

Gianantonio Rosti from Italy spoke in detail about the new ELN guidelines that are being submitted this week. It was heartening to see all 3 common treatments (imatinib, dasatinib, nilotinib) being advocated, the UK should take note. The importance of optimal and sub-optimal responses in a shorter period of time certainly supports the need for the widest range of TKI treatment.

After some useful breakout sessions and a round-up of conference activity it was time to say goodbye over a farewell lunch. Business card swapped, good wishes for the year ahead made and promises to do it all again next year were made. It’s an odd experience to spend an intense 3 days with a large group of people sharing a common vision. We are driven, desperately, to not waste a single minute and to make the most of every opportunity presented.

As I write these closing words on a plane several thousand feet above Frankfurt, Germany, my thoughts wonder to the delegates from 55 countries currently being pinged through the air, like me, back home. The responsibility of the conference weighs heavy, it is now our job to return home and share what we have learnt.

It’s with thanks I sign off; to the scientists, Doctors and nurses, the conference organisers and my buddies Nigel and Tony. To our friends at the conference and all over the world, for those able to support and those in need of support, we are together. For those having a tough time on drugs, recovering from and waiting for a transplant, we are there for you. Nobody said it was going to be easy but we continue to defying gravity every single day.

Thanks for reading.

Kris