Diabetes Support Organisation - DiabetesSisters.org

I wanted to write this post six months ago but finding time to write seems to be a luxury I can’t find these days. However, the timing is perfect now because of the support I have felt from the diabetes community in the last couple of months.  I’ve never felt more supported by my peers with diabetes, felt more a part of a like minded community and part of something really big.

Being part of Diabetes Sisters is like this too. DiabetesSisters.org is a nonprofit organization specifically for women with diabetes. They are a support and education machine and do so by encouraging, empowering and training women to form PODS (Part of Diabetes Sisters) in their local area. I seriously wish we could bottle and ship here to Ireland. Oh wait, we could. Keep reading! With only 3-4 paid staff based all over the US, Diabetes Sisters use technology to make sure their PODS leaders are fully supported. This means we could have PODS in Ireland:-D

Myself and Anna Norton, DiabetesSisters CEO on a flying meetup in Dublin April 2016

I met Anna Norton, Diabetes Sisters CEO in 2015 in Florida at Friends for Life, where she facilitated one of the workshops I attended. I’ve since discovered that we were diagnosed the same year, our sons are close in age and she too, has a husband who says “you should do it!” 

When I won a scholarship to attend the DiabetesSisters Weekend for Women conference Alexandria, Virginia Last October, I was so excited to have a chance to meet up with Anna again and make some new friends. (See the very end for my disclaimer.)

Even though, the weekend was packed with educational presentations and peer support sessions, there was lots of down time and socializing. This conference nurtured diabetes advocacy by the buckets!

PODS (Part Of DiabetesSisters) Meetups: A DiabetesSisters signature program

PODS Meetups are an opportunity to share experience, information, and support with others who have been there too.

Meet in person or online with other women living with diabetes for peer support, education, and encouragement.

Women age 18+ living with any type of diabetes or prediabetes are welcome, regardless of whether they were diagnosed yesterday or 40+ years ago.

We strive to create an open, respectful environment for women with diabetes and prediabetes to truly focus on their health.

Find out more about becoming part of DiabetesSisters HERE. 

History

Brandy Barnes founded DiabetesSisters in 2008 and served as the organization’s CEO until 2015. She was Diagnosed with type 1 diabetes at the age of 15 (1990), she quickly dove into learning all she could about the disease. The more she learned, the more she wanted to help others with the disease.
 
It was during her pregnancy with her daughter that she began to feel isolated and overwhelmed. She could not find specific resources for women with diabetes going through pregnancy. Thus began her vision for DiabetesSisters, a place where women with diabetes could get answers and support. 

DiabetesSisters recognizes that emotional and peer support is vitally important to a woman's overall wellbeing. Through DiabetesSisters' education and support services, women form a special bond and can freely share information, helpful tips, and stories of hope.

Disclaimer: Diabetes Sisters paid for my conference registration and accommodation but also gave me a contribution towards my travel costs. All they asked for in return was that I would write a blog post about the conference which I had to do anyway because I learned so much that needs to be shared;-)

Libre4All Update

Some of you may be aware that I have been collaborating with two other members of the diabetes community on the Libre4All campaign: Davina Lyon from Kildare/Offaly, Liz Murphy from Waterford. We are also collaborating with Diabetes Ireland.

The Press Release below was issued by Diabetes Ireland on Monday afternoon, 12th March, it's a combination of the press release myself, Davina and Liz issued on Monday morning and new information received by Liz.

We are asking the Minister for Health, Simon Harris, or a representative from the Minister’s office, to meet with us and other representatives from the diabetes community on Wednesday 18th April to discuss our concerns relating to the reimbursement scheme. The Minister has nominated two senior officials from the Minister's Office to accept the petition. 

If you are someone who is affected by the restricted access to the Libre reimbursement:

We would encourage you to contact your local TD’s to ask the Minister why the Freestyle Libre Reimbursement scheme is only available to children aged between 4 and 21 years?

If you are a parent of a child with diabetes who is included in the reimbursement scheme:

We ask for your support also. I feel that the message the HSE is sending out to our children with type 1 diabetes is that when you become an adult with type 1 diabetes you will be treated this unfairly and harshly. Please ask your TD's to ask the Minister why this scheme is not available to all people with diabetes?

We are also seeking media volunteers who use the Freestyle Libre from all over the country. If you would like to share how this device has made a difference in your life please email me at Grainne@thriveabetes.ie We would really appreciate it

HSE Denies Thousands Access to Life Changing Diabetes Device

Petition for “Equality for all people Diabetes” gathers over 16,000 signatures
 

The Type 1 Diabetes community has reacted angrily to the announcement last January by the Department of Health welcoming the HSE’s decision to reimburse Freestyle Libre. The reimbursement scheme comes with restrictions that leave thousands of people with type 1 diabetes denied access to this life changing diabetes device.  

More than 16,000 people have signed an online petition campaigning for reimbursement for all people with type 1 diabetes called “Equality for all People with Diabetes” created by diabetes advocate, Davina Lyon.

There are approximately 20,000 people with type 1 diabetes in Ireland. According to the 2012 Irish Paediatric Diabetes Audit, there are 2,750 children under 16 years with Type 1 diabetes. With the current restrictions on the reimbursement scheme only a small percentage of those children will be included and 17,000 adults with type 1 diabetes completely excluded because of their age.

The HSE used the Health Technology Assessment Group (HTAG) Advice Note to estimate that the “average additional cost per patient per year for using Freestyle Libre is a minimum of €62.60” making the cost of providing the Libre to all people with type 1 diabetes approx. €1.2 million, with an estimated additional saving in the “expected reduction in the need to perform finger prick testing of over 2000 times per year”.

This is an insult to the diabetes community as the HSE has already saved €5 million on blood glucose strips since April 1st, 2016, when the rules governing access to blood glucose strips for people with Type 2 diabetes were changed.

Representatives from the Diabetes community: Davina Lyon from Kildare/Offaly, Liz Murphy from Waterford and Gráinne Flynn from Clare, have requested a meeting with Minister Simon Harris on Wednesday April 18th to discuss their concerns and to present the online petition.
 

Diabetes Ireland said it is extremely disappointed that the ground-breaking Freestyle Libre technology is not being made available for every person with Type 1 diabetes, based on their clinical need. We are very much aware of the many disappointed adults, who currently pay up to €120 a month for this device and have seen much improvement in their health and quality of life from using the device daily over the past 12 months.

A lot of these adults were encouraged to get the device by their diabetes team based on their clinical need and on the basis that it would eventually be reimbursed by the HSE, as it is in the UK and many other countries.

Diabetes Ireland is very supportive of the Type 1 Diabetes Community Advocacy Group position and firmly believe that everyone with Type 1 diabetes should have access to the technology that bests support them to clinically manage their condition most effectively on a daily basis. However, it seems in this instance the HSE decision was based more on a cost basis rather than from the perspective of the patient’s quality of life and clinical need.

Further information from the HSE issued today in a response to a recent Parliamentary Question by Mary Butler TD set out the following patient eligibility criteria for a Freestyle Libre.  However, the is causing more confusion as the HSE has not made it clear whether a person needs to meet just one of the criteria, or all of the criteria to qualify for a Freestyle Libre. If it is the case that all of the criteria needs to be met, then only a very small group of people will be eligible and this is not acceptable. The HSE will be asked to further clarify and explain its position on this issue.

Eligibility Criteria for Freestyle Libre
1. Type 1 Diabetes
2. Children and young adults aged 4 - 21 years
3. Patient using multiple daily injections of insulin or insulin pump therapy
4. Patients who have increased blood glucose testing requirements (≥8 times daily)
5. Frequent episodes of diabetic ketoacidosis (DKA) or hypoglycaemia which have included hospital admissions
6. Patient is not pregnant
 

Thriveabetes 2018

I don't have a blog post this week because I'm in the midst of making sure everything goes without a hitch for this coming Saturday at Thriveabetes.

If you are new to my blog here's a little backstory to this event. It is a one day conference where you learn to Thrive with type 1 diabetes (hence "Thrive-abetes"). It was founded by myself, and fellow members of the Clare Diabetes group: Christine Meehan, and Rebecca Flanagan. 

It was inspired when myself and Christine travelled to a similar conference called "Friends for Life" organised by the Children with Diabetes organisation in the UK in 2014. It was amazing!!! It was the first time I had been in a room with so many other adults with type 1. I knew exactly who they were because of the coloured wristbands. 

Everybody is connect to the world of type 1 diabetes. It's a place where no one has to explain what a HbA1c is? Or that a "high" is not from something other than glucose. 

So, that's where I am and I will be back soon:-)

HSE Discriminates Against People with Type 1 Diabetes

The HSE discriminates against people with type 1 diabetes on the Freestyle Libre reimbursement scheme announced on January 19th 2018. The HSE states that it bases it recommendations on the Health Technology Assessment Group (HTAG) Advice Note so “that numbers being treated do not exceed that expected”. 

The HTAG Advice Note recommends that:
 “Careful patient selection should be part of the agreement, with hospital consultant initiation, and preference for children and young adults in the first instance so that numbers being treated do not exceed that expected, despite the lack of clinical evidence that the Freestyle Libre is beneficial for this group. 

I completely support taking a phased approach to this scheme as nobody knows how much it’s going to cost or save and this is a brand new scheme that will need to be tweaked.

Service Providers Must Make Reasonable Accommodations

However, there were many, many, many ways the HSE could have found to phase in the Freestyle Libre, in addition to clinical need but not limited by age. I can think of three straight away that would also not not allow the numbers of users to exceed expectations.

In fact, “The law which deals with disability in the provision of goods and services is the Equal Status Acts 2000-2015 (ESA) “says that service providers must make reasonable accommodations so that people with disabilities can use services like everyone else (Source - Human Rights Equality Commision).

I would actually argue that a person growing a tiny human in their dysfunctional body or a person who is on the verge of developing diabetic complications should be included.

Maybe a person with a medical card who would otherwise never afford this device should be prioritised?

Or person who is required to do SMBG testing "more than 10 times a day if this is necessary because of the person's lifestyle (for example, driving for a long period of time, undertaking high-risk activity or occupation, travel)." Source: UK NICE Guidelines. The NHS have issued similar guidelines to the Regional Medicines Optimisation Committee (RMOC) on who should be reimbursed for Flash Glucose Monitoring Systems.

Lacks Clinical Evidence to Support Recommendations

The HTAG document makes it’s recommendation that this device be approved for children without any clinical evidence to support it. 

It completely contradicts itself by saying that none of the clinical trials used to based their recommendations on had children as participants, that they are “unclear whether data from these (clinical trials Bolinder et al. 2016; Haak et al. 2017) trials are generalizable to children.” The HTAG acknowledges that “There is limited data to support the routine use in people who are less well managed or in children and young people.”

Yet this is the group they recommend. The HSE have chosen to ignore the clinical evidence from two clinical trials of the many, many benefits to adults on MDI. 
“Careful patient selection should be part of the agreement, with hospital consultant initiation, and preference for children and young adults in the first instance so that numbers being treated do not exceed that expected.”

They also chose to ignore the Expert Opinions who:

“consider the product would be of benefit to all patients with diabetes using multiple daily injections, however those who would benefit the most include:

• Young people with type 1 diabetes
• Parents or carers of children with type 1 diabetes
• People who struggle with SMBG
• People who lead active lives
• People who have poor hypoglycaemic awareness”.

Continuing Discriminatory Pattern towards Adults with Type 1 Diabetes

This is not the first time that the HSE have discriminated against adults with type 1 diabetes. Adults have been excluded from standard access to insulin pumps and from standard diabetes education so “that numbers being treated do not exceed that expected”. And now, the Freestyle Libre. 

When will the 13,000 Adults with Type 1 diabetes have the same provision of medical devices and services as children with type 1 diabetes?

When will our HSE and our government stop viewing us as a financial drain on the healthcare budget and finally see adults with type 1 diabetes as people worth investing in?

The HTAG document was published on the 11th November 2017 and can be found here. As of 3pm Thursday 15th February, this document has been taken off he HSE website, if you would like to view it you can do so here.

I posted my initial reaction to the HSE’s announcement here if you need background information.

See this post from Thriveabetes on what is happening with the Equality for all People with type 1 diabetes campaign.

Diabetic Retina Screen time

I remember the first time I got a letter like this from my Diabetic Retina Screening stating that I had background retinopathy. It. Freaked. Me. Out. Big Time! The language of the letter did not help either. It was actually my very first screening with the new service in 2015.

It was such a shock as all previous eye exams done at the community health centre were reported clear. I suppose it’s the difference between having a digital image that the reader can magnify and only relying on a human eye.

I remember trying to decide if I should have faith in the service to refer me if I needed it. Or if I should get a second opinion. I chose the first option but my faith was shaky.

My subsequent letter after my screening in 2016 stated that there was no background retinopathy. So, I assume that retinopathy fluctuates just like blood sugars and this is why I’m not freaking out this time.

*** Although, again, the wording of the letter is not in any way helpful.

I think every single person with diabetes worries about the health of their eyes (among other worries) and so if I don’t get an appointment for my annual screening I seek one out.

I didn’t have to do that this year though, so that was nice. Although, I frequently have to rearrange it because it clashes with school collection times.

One the day of my appointment I bring a driver with me. The dilation drops usually take a couple of hours to wear off and it’s difficult to drive. Oh! I also try to remember to bring a pair of sunglasses. Even if it’s not sunny. This year, I was not successful in remembering and it was the first gloriously sunny day we’d had in weeks. So very bright.

I was in and out of my appointment in less than a half an hour and I had my results at the end of the week.

I really wish that their letter was worded a little more compassionately and appropriately. “It is important to control your blood glucose and blood pressure”. Duh, trying to do that every single day!!! Have you ever tried to “control” something as volatile as a toddler?

If you are new to diabetes or new to the Diabetic Retina Screen Service here are some pointers.

WHAT IS THE DIABETIC RETINA SCREEN SERVICE?

Diabetic RetinaScreen was launched in 2013. It’s an Irish government-funded screening programme to ensure all people with diabetes over the age of 12 years are offered a free annual diabetic retinopathy screening.

It is limited to children over 12 years because complications of diabetes are so rare in children.

The Diabetic RetinaScreen programme uses specialised digital photography to examine the eye.

If you have diabetes, it is important to have the back of your eyes effectively screened every year.
 

HOW DOES THE DIABETIC RETINA SCREEN SERVICE WORK?

When you are diagnosed with diabetes, any type, either your GP or you need to be registered with the service. You can self register here.

You can check if you are on the register by by ringing Freephone 1800 45 45 55 (choose option 1).

Once registered, you will be invited for a screening appointment via letter.

Always remember that if the appointment is a day or time that is difficult for you, a quick phone call can rearrange. I think there may even be Saturday appointments!

Something else that is important to know about the screening service is that it is ONLY checking for retinopathy and diabetes related eye complications. This screen does not determine if you need glasses or if you wear glasses if you need your prescription changed.