Hope in the Pipeline

There is hope in the pipeline for those affected with Rare Diseases and Disorders such as myself going forward.

It’s been a busy start to the month for those interested in Health Reforms & policies here in NZ, as the Health Minister Andrew Little announced this week that the Government has urged the drug funding agency Pharmac to focus on equity and collaboration.

According to an article on Radio New Zealand’s (RNZ) website Andrew Little said that “the government had agreed in principle with most of the 33 recommendations put forward by a panel of independent experts” who were tasked with doing an in-depth review on Pharmac.

He went on to say that, “Pharmac will need to engage more with other parts of the health system and the public” and that “a strategy for rare disorders also needed to be developed“. But the strategy was to be the Ministry of Health’s responsibility with Pharmac’s involvement, “so we will fundamentally change the way we approach rare disorders“.

This is potentially welcome news for those like myself who suffer with a rare disease or disorder where funding for medications that have been proven overseas to work are limited due to cost and accessibility issues, or are only available for certain conditions and not others. 

However, radical action is needed urgently to tackle the delays patients face in getting the latest drugs for a raft of diseases and conditions, health advocates say, after the review found “deficiencies” in its decision-making.

In another article from RNZ, a woman who had her bowel removed while she waited for drugs that would probably have prevented her from having major surgery hopes the Pharmac review will mean others don’t have to suffer the same fate as her.

The final report (which is available here) calls for Pharmac to develop an updated medicines’ strategy over the next year and ensure it is assessing whether it funds medicines using an equity approach.

Overall the review painted a devastating picture of a decision-making process failing Māori, Pacific and disabled patients and those with rare disorders.

But advocates say Pharmac can’t begin to address its shortfalls while its mandate remains to get the best health outcomes for eligible people within its budget.

Cancer and Rare Disorder advocates in an article on stuff are calling for more radical changes to be made after the review was released, and patient advocates question the plan to tackle entrenched inequity in a RNZ article saying that the devil is in the detail when it comes to exactly how Pharmac will address these issues of inequity.

Rare Disorders NZ who offer a central starting point for patients and families affected by rare disorders, and helps families, patients and healthcare providers find essential information and support groups have released a statement saying that they are overjoyed that the Health Minister has instructed Pharmac to develop a Rare Disorder Strategy.

On their facebook page they post they recognise that “this is a huge moment for the rare disorder community in NZ after years of tireless advocacy by so many in the community“.

Scoop an independent news website also ran an article about AstraZeneca New Zealand welcoming the release of the Pharmac Review Final Report and the Government’s commitment to the majority of the recommendations in it.

AstraZeneca New Zealand and Australia’s Country President Ben McDonald said that regardless of a patients stage of disease or prognosis, they should have equitable access to the best available treatments.

He went on to say that they “look forward to working collaboratively with the Government, Medsafe, Pharmac, the medical community and patient organisations to ensure the science validating the benefits of new medicines for patients is better understood, so New Zealanders do not have to wait longer than is necessary or miss out on treatments which will prolong their life and improve the quality of the time they have left.”

In the interim people such as myself will hold out hope that in due course medications that are available within the system already but only for certain conditions will become more widely available to those that need them.

Also that for those people that aren’t able to access them because their condition doesn’t fit certain criteria due to existing funding allocations will be able to do so.

As the cost of medications or a lack of funding should not be a barrier to people accessing better health and well-being in this day and age.

Check out my latest health update and more information about my condition Scleroderma, Raynaud’s and Interstitial Lung Disease here.

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A Mighty Fortress

Over the past month or so as part of my daily devotions in the YouVersion Bible App I’ve been journeying through the Book of Psalms, drawing inspiration and encouragement for my own life from the writings authors.

And although I am not quite ⅔rds of the way through them I’ve come to appreciate that the Psalms are in essence an intricately designed collection of poetry that recounts Israel’s history and God’s covenant promises, and poetically retells the entire biblical story.

The psalms comprise the ancient hymnal of God’s people and its poetry was often set to music, expressing the emotion of the individual poet to God, or about God.

There are psalms of lament, which express the author’s crying out to God in difficult circumstances. Psalms of praise, also called hymns, which portray the author’s offering of direct admiration to God. There are thanksgiving psalms which usually reflect the author’s gratitude for a personal deliverance or provision from God.

There are also pilgrim psalms which were used on pilgrimages “going up” to Jerusalem for their annual festivals, and other types of psalms such as wisdom psalms, royal psalms (referring to Israel’s king or Israel’s Messiah), victory psalms, Law psalms, and songs of Zion.

The book of Psalms expresses worship and throughout its many pages they encourage its readers to praise God for who He is and what He has done. Which I’m sure is something that well renowned preacher, theologian, and the leader of the protestant reformation, Martin Luther knew and was enamoured with.

Now Martin Luther as early as 1517 started translating the Psalms into German and as he was also a gifted musician he wrote and composed the famous hymn: “Ein Feste Burg Ist Unser Gott,” – “A Mighty Fortress Is Our God” in 1527, basing it on a paraphrase of Psalm 46.

A mighty Fortress is our God,
A Bulwark never failing;
Our Helper He amid the flood
Of mortal ills prevailing:
For still our ancient foe
Doth seek to work us woe;
His craft and power are great,
And, armed with cruel hate,
On earth is not his equal.

Did we in our own strength confide,
Our striving would be losing;
Were not the right Man on our side,
The Man of God’s own choosing:
Dost ask who that may be?
Christ Jesus, it is He;
Lord Sabaoth His Name,
From age to age the same,
And He must win the battle.

And though this world, with devils filled,
Should threaten to undo us,

We will not fear, for God hath willed
His truth to triumph through us:
The Prince of Darkness grim,
We tremble not for him;
His rage we can endure,
For lo! his doom is sure,
One little word shall fell him.

That word above all earthly powers,
No thanks to them, abideth;
The Spirit and the gifts are ours
Through Him who with us sideth:
Let goods and kindred go,
This mortal life also;
The body they may kill:
God’s truth abideth still,
His Kingdom is forever.

Helen Steiner Rice it would appear also became somewhat enamoured with the Psalms, after the death of her husband, the editor at her workplace, and her mother. As she began to write inspirational verses to friends and co-workers and enclose them in personal notes and letters. These reflected her growing and deepening faith and reliance in God.

One such example are the words to a poem entitled Faith is a Mighty Fortress which she penned in 1967.

We look ahead through each changing year
With mixed emotions of hope and fear —
Hope for the peace we long have sought,
Fear that our hopes will come to naught.

Unwilling to trust in the Father’s will,
We count on our logic and shallow skill,
And in our arrogance and pride,
We are no longer satisfied
To place our confidence and love
With childlike faith in God above.

And tiny hands and tousled heads
That kneel in prayer by little beds
Are closer to the dear Lord’s heart
And of his kingdom more a part
Than we who search and never find
The answers to our questioning minds  —
For faith in things we cannot see
Requires a child’s simplicity.

Oh, Heavenly Father, grant again
A simple, childlike faith to men,
Forgetting color, race, and creed
And seeing only the heart’s deep need.

For faith alone can save man’s soul
And lead him to a higher goal,
For there’s but one unfailing course  —
We win by faith and not by force.

May the words contained within the song lyrics and poem above be an inspiration and encouragement to you each today as you go about your business in the everyday 🙂

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Health Update #7

Here I go again…

No I’m not referring to the classic Whitesnake song of the 1980’s 🙂

Boy am I showing my age or what!

I’m referring to my latest Health update (Health Update #7) ‐ as I sit here and relax @ Hutt Hospital getting the latest treatment for Scleroderma and Interstitial Lung Disease (SSc‐ILD).

What better way to welcome in Scleroderma Awareness month by having an infusion at the Medical Day Centre.

About 15 months ago I finished a course of 6, monthly cyclophosphamide (chemo) infusions to try and get on top of my health condition (predominately the Scleroderma). It seemed to work for a few months, before my breathing became a bit of an issue and bouts of fatigue started to really knock me about a bit.

I was placed on high doses of prednisone initially which helped for a while with the breathing, but as I started to wean of that medication the breathing issues would be exasperated. This has meant that I’ve had to stay on a mid-dose of prednisone to keep things in check.

Apparently the long-term side effects of prednisone are not overly beneficial for people and the specialists generally don’t want patients to be on it for the long haul unless absolutely necessary.

So for the past six months we, along with our respiratory specialist, have been exploring other options.

Unfortunately, due to insufficient funding for alternative drugs for my condition this has meant that we’ve had to source medications ourselves and fund them.

Also due to the complications that Covid could have on my system and any other cold & flu, respiratory and RSV’s that may be circulating at this time of year as we approach the winter season here in NZ this has had to be weighed up carefully, assessing the pro’s and con’s of what is out there.   

Thankfully, our local pharmacist was able to source a generic brand of rituximab which should, all going well, last for 6-12 months and have a better chance of assisting with the ILD as chemo does.

Although this does come at quite a substantial cost. As if the price of cheese wasn’t bad enough at the moment 🙂

So today I am again hooked up and subjecting myself to having to be pumped full of medicine which may, or not work – But as I’ve said before we will give anything a go if it means I have a chance at a better quality of life.

Interestingly, many of the side effects of taking rituximab; back and body aches or pain, bloating or swelling of the face / arms / hands / lower legs / or feet, chest pain or tightness, and difficulty with breathing I already experience. Hopefully some of the others I won’t have to experience though.    

It will however mean that for the next few months I will need to continue remaining extremely vigilant and careful about being in group settings and ensuring (as much as possible) that I don’t catch a cold, get sick or catch an infection, or anything of the like, as my immune system is in effect being wiped out and reset.

More tests will follow in 3 months to assess how things are progressing and to check if the medications have done what they need to do. If they haven’t we do have an additional more expensive option nintedanib. But I may need a small loan to access it as again this is not funded in New Zealand for people with my condition, even though it is used to slow the rate of decline in lung function in people with systemic sclerosis-associated interstitial lung disease.

I’m extremely grateful for the specialists and other health services that have been working with us as we navigate what we can do to ensure a better quality of life for me in this time and space.

It can be quite draining mentally, physically and emotionally as one becomes familiar with a whole new vocabulary and navigating a health system that at times can get confusing. Especially when one has to also adapt to doing things differently to what they are used to – I can also understand why some people get to the point of giving up.  

Today I’m also especially thankful for the team @ Hutt Hospital Medical Day Centre that continue to look after me as I go through the process of having these infusions – you are legendary 🙂

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