IDF Youth Leadership Camp 2017

Last week, I had the incredible experience of attending the IDF Europe Youth Leadership Camp in Romania to represent Diabetes UK. I was elated to be offered a place on the camp. I had limited knowledge about healthcare variances in Europe, so looked forward to learning more and recieving training in advocacy for my own diabetes-related projects.

As I stepped off the plane in Cluj-Napoca, I couldn’t wait to meet the other participants, but the day’s travelling weighed heavily on my eyelids. I couldn’t even introduce myself to three other participants as we shared a taxi to the hotel. Not even the taxi driver’s drastic swerve on the highway to avoid a head-on collision could stop my head from nodding!

My excitement returned as I began meeting other participants in the hotel restaurant, and we each recalled our diagnosis and how we ended up at the camp. It was astounding to hear the variety of care, which was reiterated within presentations.

There were two representatives from Diabetes UK: myself and Alyssa, from the Scottish branch. We were able to give a thorough description of Diabetes UK’s expansive history and current work in our individual presentations, and highlighted minor differences in care between Scotland and England. It was exciting to introduce the work of Diabetes UK to the other members; as the oldest association, we have contributed significantly to patient care since its foundation in 1934, from patient support groups to Professor Wong’s current research into gut microbiota.

Attempting to introduce myself

I thoroughly enjoyed meeting participants and listening to each country’s presentation throughout the week, yet I was struck by the variation in access to free supplies. For example, we learnt about limitations to free test strips; in Lithuania, adults over 18 receive only 75 reimbursed test strips per month. Given people with Type 1 should test at least 4 times a day, this requires approximately 120 strips per month, meaning patients are forced to purchase strips if they are to meet the recommendation. Patients in Ukraine and Moldova face the entire cost of insulin and supplies. It was a stark and humbling reminder of how much I take for granted from the NHS.

In addition, it was interesting to note the increased use of the Abbott Freestyle Libre. Belgium and Sweden both provide funding for the sensors, and France has recently followed suit. This is currently under consideration by the NHS, and their uptake suggests promising results are ahead for the UK.

Levitating in the sun

Interspersed throughout the week was an intimidating number of exercise sessions! Admittedly, I have always struggled with sport, especially since my diagnosis. However, one of the greatest reasons behind my application was to improve my confidence, so I tried to get involved as much as possible, as I had been doing in the workshops and presentations. I need not have worried; the group was so kind, and Kyle, who led many sessions, was so welcoming and involving. Despite my terrible volleyball and shameful football ability I still had a fantastic time! Perhaps the most memorable/embarrasing moment was participating in a flash mob, in the 115m depths of a salt mine… click the link below and you may spot me!

https://www.facebook.com/salinaturda/videos/1853906304826844/

The UK reps: Post flash mob

Post-flash mob paparazzi shot

 

The workshops and presentations by IDF board members were also fascinating. A workshop on advocacy by IDF’s intern Weronika was incredibly useful, as we discussed pitching ideas by creating ‘personas’ (character profiles) who we may be addressing, and making an idea as relevant as possible to all personas. It is far too easy to identify a company as a single entity as opposed to the faces behind the work, and this personal level is key to gaining interest and building relationships with potential sponsors and partners. I did not expect the presentation to have such a business-orientation, but the structure of developing a pitch with different perspectives in mind made me more conscious of potential flaws in a plan, and encouraged me to think more broadly about target audiences.

Similarly, it was fantastic to meet the faces behind IDF Europe. To meet the figures behind the work was beyond inspirational. As many of the representatives aspired to increase access to diabetes care, we had the rare and exciting opportunity to discuss topics such as sponsorships and project development with people working in the field. We were encouraged by their support and honesty; the leaders of the camp immediately made us feel comfortable to voice our opinions, making sure we could make the most out of the sessions and the week as a whole. Suddenly, even the most ambitious plans began to seem possible, and with the training received in presentations, I now feel ready to set projects in motion and make real change in the UK.

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I cannot thank IDF Europe and Diabetes UK enough. It went above and beyond my expectations in every way, and the inspiration we have gained from IDF staff and the incredible work by participants in their countries has motivated me and strengthened my vision for improved care in the UK. I are excited to get back to work, with a refreshed perspective on the UK’s position in Europe – and also the support of a new international network of friends!

Writing about Access to Diabetes Supplies in Cameroon

As my first published article on the issue of access to diabetes supplies, I was looking forward to hearing the responses from readers. The cost of insulin and supplies is one of the most controversial topics in improving diabetes treatment, and is one of the greatest challenges in securing the health of those living with diabetes in lower income countries.

My article discusses the issue of pharma promoting their own products within aid packages. I argue that the use of biosimilars, although potentially not as effective as patented insulin, should be prioritised in order to establish long-term access to care, instead of relying on pharma aid programmes (which could cease at the will of the company). Although this would not be supported by many companies like Novo Nordisk, who would lose money from such an initiative, I believe it is one of the only ways insulin access can be broadened.

Aid programmes funded or organised by pharmaceutical companies undeniably have positive effects on the few patients who take part, however if true widespread access is to be achieved, the answer lies in policy changes and cheaper/subsidised supplies.

Please read by clicking the link below, and I look forward to reading more comments/opinions!

Link to my article:  Novo Nordisk’s ‘Changing Diabetes’ Aid Programme Exacerbates Issues of Insulin Access, and Must End for Compulsory Licensing to be Effective

 

 

Article for Insulin Nation: clarification

Since writing this article, I feel that my opinion needs to be clarified.

My intention was to highlight how current diabetes technology is overpriced, and the NHS should not be forced to pay these prices. Diabetes already puts a huge strain on our National Health Service, and in its current over-stretched state, it is not possible for it to fund the highly expensive continuous glucose monitors (CGMs) currently on the market. Therefore, companies should face increased pressure to lower the prices of CGMs, so the systems could be made available on the NHS.

I argued this point with relation to the Freestyle Libre; a cheaper alternative to CGMs which is undergoing consideration for NHS funding. Whilst the Libre is a fantastic piece of technology which personally improves my quality of life, it is still far more expensive than it should be. Although the NHS may be able to afford it, that does not make its current price right.

For that reason, I argue that the Libre device does not deserve to be on the NHS, at its current price. The NHS should be able to negotiate lower prices to make the technology more affordable and realistic.

Furthermore, CGM technology must undergo a reduction in price. CGMs are far more useful to people with diabetes due to their alarm systems, and if they were made affordable on the NHS, it would be much more preferable to prioritise access to CGMs over the Libre. It is not fair that the NHS must choose the lesser technology purely due to price, when there are many people who suffer hypoglycaemic unawareness who cannot afford alarmed CGM technology.

Read my article here:

http://insulinnation.com/treatment/the-abbott-freestyle-libre-doesnt-deserve-nhs-coverage/ (at its current price).

 

 

Young Adults Panel: Diabetes UK Meeting

Published on the Diabetes UK website: https://blogs.diabetes.org.uk/?p=8785

The capital welcomed me with its invariably cold stare. Or perhaps that was a manifestation of my sleep deprived, caffeine jittered mind. Either way, I had succeeded in waking up before my flatmates had returned home, and raced the rising sun to the railway station. I was in London, and the smog concurred.

I was on my way to the Diabetes UK head office in Aldgate, to meet the staff and the other 17 members of the young adults panel; a selection of 18-30 year olds, all with Type 1 diabetes, all wanting to make change in how the charity supports our age group.

I was really excited, both to meet the panel and to be in London. Despite the supercilious atmosphere I (rightly or wrongly) detect from the city, I love its aesthetic. The view down the tube carriages as they veer left. The weird kooky side streets. The weird Bacon-eque screaming non-eyed Theresa poster. Especially the poster.

I love meeting people with T1 diabetes. I was of course looking forward to discussing ways support could be improved in the UK and learning about Diabetes UK’s current aims and projects, but there is something indescribable about meeting others with the same condition. Anyone with a chronic illness will understand this. I couldn’t wait.

There was a great range of people from all over the UK, and had an amazing time chatting and sharing how we found out about the panel. After introductions, we began discussing the online content Diabetes UK provides, including Travel, Sex and Relationships, and Mental Health.

One fantastic idea that resurfaced a few times during the day was a ‘Tinder’ style meet-up app, not for dating but for meeting others with the condition locally. Something we all seemed to agree on was the isolation the condition brings, so being able to meet others online or locally would be amazing! As a student, this was particularly interesting to me; in the US, diabetes support chapters exist in universities, whereas in the UK this does not seem to have caught on. An app like this could make the transition from home to university much smoother, with the help of a person in a similar situation!

Alcohol and drug use was also discussed amongst some panel members. Whilst any organisation could not appear to endorse either, it is a fact that many young people come into contact with one or two of these substances, and shaking a finger is not going to prevent it. There must be some kind of confidential support available for people with Type 1 diabetes to consult, in order to make their experience as safe as possible.

I also raised the question of diabetes treatment for the homeless. Without permanent addresses, it can be exceptionally difficult for homeless people to gain any kind of care, and for homeless people with diabetes, I cannot imagine how difficult it is to access care; and it seemed this was a gap in Diabetes UK’s work. I need to do more research into this, but it is something I am interested in pursuing in Leeds, to find out how care is given.

Lunch was brilliant. Seeing the pumps and pens appear from bags and pockets was totally bizarre, especially as the pump-users compared brands and showed off the tech. I must admit, as a boring MDI user, I was a bit jealous of the gadgets!

 

I do really love events like this; so many inspiring people, and a small jolt to keep my own care in check. I watched as people changed their needles, checked their blood sugar… two things I have begun to slack on as the pressure of university has crept up. Sometimes it is really difficult to stay on top of my health when I watch everyone else carefree of their food… yet this is a mindset I must change.

It was a grand day. A productive, tiring day. Even the sun shone a beautiful pathetic fallacy over the city.

An overall ramble of a post, reflecting my tiredness as I type on the London -> Leeds train.

Diaversary #2

As I stride home, back ladened with dog-eared textbooks burnt with exam-cramming scrutiny, I momentarily ponder the logic of campaigning with so little time before my exams.  With my Diaversary on Monday, I spent a good part of the day gathering ideas for raising awareness, at the expense of precious revision time. It is not the first time diabetes has encumbered my revision either; it raised its ugly head exactly two years ago, a week before my A-Levels.

But diabetes is never convenient. It is the granddad on the phone when you’re revising. The new pound coin that fits into NOTHING. It is the ruined RMB and the face of Mao pasted into the lining of your shoe (a story for another post…).

More to the point: it never goes away. And I would never wish it to.

The condition has introduced me to a network of the most inspiring organisations I could ever dream of meeting. It is their commitment that has kept me going, and for this reason I feel compelled to use my 2nd Diaversary to tell students around campus about their incredible work.

So, on Monday, I will be telling students and passers-by about T1 International, the most inspirational charity I have found. It is based in the UK and involves a network of global advocates, who are all working towards improving access to insulin. I will also be pasting posters around uni too.

I will also be working alongside a JDRF member, who will be talking about how JDRF works to fund research into the T1D cure.

Thirdly, as a Diabetes UK Young Adults Panel member, I will be gathering details of anyone I meet with the condition in preparation for starting a local young adults diabetes support group, before heading off to the local Diabetes UK group meeting and proposing the idea. There is a huge gap in support between paediatric clinics and adult clinics, and with many student diabetes horror stories circulating, it is time to act, to make sure no one feels alone with the condition.

I will update with how the day goes as soon as possible; I just hope the weather will be on my side…

Diabetes activism: Why I am writing this blog

I thought too long and didn’t post, I waited for a well formulated, resonant sentence to appear in my mind’s eye to break through the writer’s block and nothing came.

But silence is the antithesis of progress. It is inaction. It is ultimately moral failure as I do not stand for what I most passionately believe in. So here goes.

I have type one diabetes, and I am one of the lucky 50% who have access to lifesaving insulin, diabetes education and equipment, and I cannot live peacefully with the knowledge that over 50 million people do not have access to the supplies I casually order on repeat.

People around the world dependent on insulin have their lives balanced on a scale built largely by the oligarchical pharmaceutical ‘Big Three’; Eli Lilly, Novo Nordisk and Sanofi. With the exponential increase of insulin from $231 a year to $736 per patient between 2002 and 2013, the information given by these companies has been characteristically plagued in obscurantism. Yet this increase is putting the poorest patients under extreme financial pressure, whilst providing investors with the capital to cement extraordinary inequality for years to come.

This cannot continue. Currently, the Big Three are being challenged by Hagens Berman, a law firm accusing the companies of raising the cost without adequate reasoning. This is a huge development, yet the actions towards broadening access are still marginal in comparison with the movements in the 80s and 90s to broaden access to HIV retroviral drugs.

Access to insulin must be broadened, alongside effective education to enable people with the condition to live full, active lives. Myths must be broken and lives must be valued over profit. If there is anything I have learnt from politics this week, it is the power of the collective voice and protest; the more voices we have, the more awareness is raised.

So, first post over!

Sources:

https://www.t1international.com/blog/2017/01/30/patients-vs-pharma-hagens-berman-files-complaint-against-eli-lilly-novo-nordisk-and-sanofi/

http://ihpi.umich.edu/news/sugar-shock-insulin-costs-tripled-10-years-study-finds