Member Services

According to VERTEX ‘Since the beginning of this year, we have been working with the HSE to update the reimbursement agreement to ensure the broadest possible access for our medicines today and in the future. Our focus has been to provide the authorities with all the information required and we have put forward several solutions that would allow rapid access for these 35 children and other patient populations who are not explicitly currently included in the agreement, who may become eligible for our medicines in the future. This has included extending the agreement in a manner consistent with the existing terms’ (26th May 2022, Open Letter).

Vertex added in a later statement ‘The 35 patients in the 6 to 11-year-old patient population with specific genotypes were not included in the original agreement. We have offered to include these additional patients at the same cost per patient as the existing agreement’ (22 June, Statement to The Examiner newspaper).

What is CFI’s approach to advocacy in support of the 35 children?

CFI has adopted the following approach, in partnership with our members and approved by the CFI Board:

• To inform CFI members, based on the most up to date and available information that we have, but also noting that CFI is not party to these negotiations so we will never have all the detail and have to make our own assessments accordingly

• To advocate for and with those families impacted by this decision and to seek broader support from the whole

CF community through a Campaign for Kaftrio working group

• To flag this issue as an urgent matter of concern that needs resolved by VERTEX and the HSE/Department of

Health.

• To ensure that the general public is aware of what we contend is a human rights issue

• To seek meetings with VERTEX and the Irish Government to highlight the concerns of parents

• To underline that the responsibility for resolving this dispute lies between the Government and VERTEX

What happens next in the process?

CFI understands that at the time of writing that negotiations continue, which is a hopeful sign but then again does not necessarily determine a positive outcome.

If the outcome of the present talks is ‘no agreement’, the dispute will be referred to the National Centre For Pharmaco- Economics (NCPE), the body that decides on the effectiveness of drug therapies in Ireland. The NCPE has already undertaken a rapid review on the genotype sub set impacted by the dispute and recommended on 10 May that a full Health Technology Assessment (HTA) should be undertaken. It is now up to the HSE whether to follow this route. There are basically 3 options that can emerge from an HTA in Ireland: ‘Yes’ ‘No’ or ‘No- not at this price’. The latter outcome usually triggers more prolonged negotiations. The HTA takes 90 working days but in practice this process can be much longer.

On the 6th June 2022, the Department of Social Protection launched a new 'Additional Needs' payment. This payment is available if a family have expenses that cannot be paid from the weekly income. A request can be made to the Community Welfare Officer and you can find more relevant details below.

What is the Additional Needs Payment

An Additional Needs Payment is a payment available to you if you have expenses that you cannot pay from your weekly income. You may get this payment even if you are not getting a social welfare payment. It also may be available to you if you are working and on a low income.

The DSP can provide Additional Needs Payments for: • the increased cost of fuel and electricity • essential repairs to property, including motor vehicles and replacing household appliances and furniture • assistance with deposits for private rented accommodation • furniture, bedding and other items if you are setting up a home for the first time • funeral costs • recurring travel expenses such as for hospital appointments or visiting relatives in hospital or prison • food, clothing or shelter in the aftermath of a fire, flood or other emergency event • other additional exceptional needs as they happen

Additional Needs Payments are paid under Supplementary Welfare Allowance and are administered by the Community Welfare Service (CWS) of the department.

Anyone on a social welfare payment or working and getting a low income may qualify for an Additional Needs Payment. Your weekly household income, expenses and the type of assistance you need will be taken into account.

To get an Additional Needs Payment, your application will be reviewed by a Community Welfare Officer and they will look at your circumstances before deciding the payment you can get.

Rate of payment

There is no set 'rate of payment' for the Additional Needs Payment. The payment you get will depend on your weekly household income and the type of assistance you need. Examples of applications for the Additional Needs Payment

How to apply

You can fill out the form below and send it to your local Community Welfare Service or you can get the form in your local office and fill it out there. There is no need to make an appointment. The application can be submitted by post. Find your local Community Welfare Service.

Application Form: Supplementary Welfare Allowance (SWA1) Claim Form for Supplementary Welfare Allowance/ Additional Needs Payment. Download

What you need to provide for us to help you with your claim

To help process your claim, you should have the following: • Personal Public Service Numbers (PPSNs) for yourself, your spouse, civil partner or cohabitant and your children • proof of identity, for example: a Public Services Card (if you have one), a passport, driving license, work permit, immigration (GNIB) card • documents to show your income, expenses and financial situation, such as pay slips and bank statements.

If you have any questions about CFI grants or services, state benefits or require information about Cystic Fibrosis, please get in touch with our Member Services Team.

Sam Byrne sbyrne@cfireland.ie

Rory Tallon rtallon@cfireland.ie

Caroline Heffernan cheffernan@cfireland.ie

Following on from the travel tips provided in the last edition of Spectrum, CFI Member Thomas Henry tells us about a recent European trip he took and what travel looks like for him as a post-transplant PWCF.

For years I had been trying to plan a trip to Disneyland Paris as I'm a huge Disney fan. I'm a big child at heart really - anything Disney I just love. I had heard people talking about how expensive it was so I just kept putting off planning it myself. Last Christmas morning, as one of my surprises, my boyfriend had bought us a trip to Disneyland Paris. You can imagine the surprise I got, I was ecstatic! We went over on the 21st of March this year for 4 days and 3 nights.

Going away anywhere, I always pack a few days beforehand as there is quite a lot of medication I need to bring, even more now than before I had my transplant. I have a specific tablet box that I fill, which holds four days of my tablets at a time in morning and night time compartments. If I'm going away for a few days or a week I would fill maybe two boxes so I have them made up for me ready to take. Then I also bring a week or two supply in their blister packs and leave them in my bag.

I'm always afraid I will lose my medication so I have some in my hand luggage and some in my big case, just in case one goes missing. If it does, at least I have the other stash. As I always say 'its better to be looking at them than looking for them'. My nebuliser goes into my backpack carry on too and nebules are in a cooling bag inside my little backpack. My backpack is like Mary Poppins handbag when I'm traveling anywhere :)

I normally get a letter from my GP to say that I'm carrying medication with me but nine times our of ten I never have to show it and they never search my carry on unless I have my sinus spray which is a glass bottle but usually I pop that into my big case.

We had the most amazing time in Disneyland. We were like two big kids amazed at everything over there. It was just something else and we're planning on going back over in a couple of years again. If you get the chance to go then you really should! Its not just for children but it will make you feel like a child again!

With an increasing number of PWCF becoming parents, some may wonder how to explain their Cystic Fibrosis to their child. But parenting generally everyone will have different perspectives, In this Spotlight, we hear from three CF parents about how they introduced their young children to their CF and hear from the children about how it was for them growing up with a parent who has CF.

Bed time stories – what magic family time with our two daughters. One of their favourite infant books centred on 10 little fingers and ten little toes but where do you start explaining to a three-year-old that cystic fibrosis is primarily a chronic respiratory illness genetically inherited from birth caused by a faulty gene encoding for the CFTR protein that results in chloride ion transport dysfunction? These little bundles of energy toddling around the place were still getting to grips with their ABC’s.

In truth I didn’t have a strategy other than a determination to include CF in their learning of the world around them as they experienced it with me in it. So, when they got past the ABC’s and began to ask questions about everything and anything from their preschool day to the moon and everything in between at that point we focussed on their favourite infant book they used to love about ten little fingers and ten little toes and took it from there really.

The Proof is in the Skin

We explained that every child and every person is different in some way that no one is exactly the same. Some people are big, some are small, some thin, some not so thin and some people are salty and that I was their salty Daddy- followed by very curious and scientific skin licking proof of concept versus Mammy as control. That sparked the why and how and we explained that’s just the way I was born.

Explanations for things they then began to notice followed over their early school years based on what they saw day to day. So, they would see me taking enzymes and taking insulin. Here we explained about the food

they eat making their body grow and needing vitamins and vegetables and fruit in their meals. We explained that the body digests food when they eat it- breaks it down into little pieces that the body uses the build their bones and muscles while they grow big and strong and for energy to keep them running around a bit like battery power when the batteries run out in their toys -they need more energy or new batteries. The enzymes I take digest my food for me because my CF, that thing that makes me salty, also means my body doesn’t produce enzymes like their body does. My enzyme tablets are a bit like Pac-Man gobbling up my food for me in my belly. Insulin was sort of the same deal too.

Good enough for them – Pac-Man was a well-established concept.

"Hello my name is Áine. I'm 8 years old and my dad has CF. My Dad is a hard working man. When he goes to the hospital I miss him very much.

It is probably very hard for him to do some things like going on long walks or long runs. So if you know anyone with CF please support them. Thank you"

Nebuliser Cuddles

They also enjoyed nebuliser cuddles. I explained about the mist helping me clear out sticky mucus from my lungs and this helped me to do my exercise too so I could stay strong and fast to try keep up with them for their chases around the playground.

That was the easy part. It was much harder explaining why I had to leave them and sleep over in the hospital for a few weeks one summer. We explained that I needed to go in for antibiotic medicines to help my cough. Oh and they don’t need to worry when they hear me coughing a little bit– that’s sort of normal for me but I need extra medicines if I cough a lot. We do have to worry though if we hear them coughing because its different for them if they are coughing and we would mind them and get them better if they have a cough.

On a Marmite Mission

They did come to visit me in hospital, they were so very nervous but they had a very special top-secret mission (ssshh - to smuggle me in my favourite jar of marmite spread). The hospital visit resulted in loads more questions but after a good play on the snazzy remote controlled bed they left feeling a bit more assured for my sake.

Thankfully our daughters haven’t ever seen me very ill. They have seen me a bit