Lung Disease Day’s

Call it coincidence, or whatever you will – but over the course of my latest two rounds of Rituximab, I have ‘celebrated‘ significant lung disease day’s while hooked up to machines.

These machines [Intravenous (IV) infusion pumps] have been providing me with the much needed medication that I require to keep my SpO2 readings at a level that allows me to function normally, well at least breathe easier for the next 4 months or so 🙂

As I alluded to in my latest health update the day after the first round of my IV infusions of Rituximab was Interstitial Lung Disease (ILD) Day (13 September). 

ILD is the umbrella term used for a large group of diseases characterized by inflammation and/or scarring in the lungs. The inflammation and scarring can injure the lungs, making it difficult to breathe and get oxygen to the bloodstream. Shortness of breath is a common symptom of ILD, along with dry persistent cough, fatigue and weakness, chest discomfort, “clubbing” of the fingertips, loss of appetite and unexplained weight loss.

Patients with some inflammatory and connective tissue diseases such as; rheumatoid arthritis, systemic sclerosis (scleroderma), sarcoidosis, etc. are at a higher risk of developing ILD.

Unfortunately, it is often progressive in nature, which means that the lung fibrosis gets worse over time.

This progression is variable, with some people experiencing slower but steady progression, while for others the disease develops more rapidly with worsening disease symptoms.

Initially the fibrosis in my lungs developed quite quickly over a short period of time, due to some active inflammation caused by the Scleroderma (apparently), before being brought under reasonable control by having Rituximab infusions every four months.

In effect I have a triple whammy thing going on, as not only is the Scleroderma and ILD a big enough risk, but the medications I have to take to control my condition also play havoc effectively knocking out the immune system.

This in effect makes me susceptible to picking up any kind of cold or flu and/or respiratory viruses, including Covid which is now classified as being endemic in the community. Meaning that I have to be extremely careful and vigilant when out and about as I’m unable to wear a mask 😦   

Anyhow, here I am sitting at Hutt Hospital Medical Day Stay Centre getting the second course of Rituximab and starting to put together this post when I get a Facebook notification advising me that it is World Lung Day.

This was established by The Forum of International Respiratory Societies (FIRS), raising awareness for those affected by lung diseases.

It is an opportunity for the global health community to promote better lung health, advocacy and action.

It’s also a chance for organizations from around the globe to discuss how they can better work together to help rid the world of all lung disease.

FIRS is calling on governments and healthcare providers worldwide to give equitable access to preventive services and treatments for respiratory conditions. 

The theme for this year’s World Lung Day is “Access to Prevention and Treatment for All. Leave No One Behind,” reflecting the commitment to equity that is at the heart of the 2030 Agenda for Sustainable Development. 

The challenge to respiratory health is evident!
There is a clear lack of equal access to preventive measures all around the world.

Here in Aotearoa (NZ) I am having to self-fund my medications as Rituximab (which is available here in NZ for other conditions) is not covered by Pharmac funding for my ‘rare‘ disease.  

This can be extremely frustrating, especially as this along with other medications that are readily available worldwide and have been specifically developed for ‘my‘ disease are not covered by Pharmac funding, even though it has been approved my MedSafe.

The thing is, I am not the only one! Anyone who has any kind of autoimmune, rare disease or disorder, or invisible disability often has an uphill challenge when seeking medical assistance for preventative medications in this country often touted as ‘God’s Zone’. 

MyLifeMatters says New Zealanders’ ability to get new and breakthrough medicines lags way behind other OECD countries, which is something I alluded to in this post.

Countless lives across New Zealand are tethered to hope, and their survival hinges on accessing new and breakthrough medicines that are publicly funded elsewhere in the OECD, but currently not here in ‘God’s Zone’.

They are calling for the NZ Government, which we get to decide in a month or so, to; 

• Access new and breakthrough medicines in a timely way.
• Provide an urgent and clear plan to implement the findings of the Pharmac Review to address the significant shortcomings in Pharmac’s performance, especially its role and funding.
• Ease the financial burden on patients, especially the vulnerable communities.

Rare Disorders NZ are also concerned about these issues as; “People living with a rare disorder are estimated to make up 6% of New Zealand’s population, yet this large community experiences substantial unmet need and inequitable access to healthcare.

With over 7,000 known rare disorders, individually these disorders occur in very small numbers in the population, but collectively, rare disorders are estimated to affect 300,000 people in New Zealand.

This is, however, only an estimate based on international data, as no data is officially collected in New Zealand on rare disorders. This is because the classification system for diseases that New Zealand uses does not include most rare disorders.“

They have collectively identified seven strategic priorities to improve health and wellbeing for all people living with a rare disorder, which you can learn more about here.

In preparation for the upcoming elections they have asked each party where it stands with regard to these seven strategic priority areas to improve the overall health and wellbeing of those voters with rare disorders.
You can read more about it here.

In the meantime, we each need to remain careful and vigilant while out in the community, and in my case prioritise my lung care as it is especially crucial, as it can lead to further complications. Through regular monitoring and early intervention it can significantly enhance my lung function and quality of life.

The thing is, the importance of living well and adopting a healthy lifestyle including taking regular exercise, eating a balanced diet, managing stress, and staying positive cannot be emphasised enough.

For those of us with these concerns we should work in partnership with our specialists and GP’s to learn more about associated issues with our conditions and develop a plan of action to help us each to live well and manage the effects now and in the future.

We need to focus on the positive things that we can do in life in the here and now.

Being thankful for what we have, as in one moment our entire lives could be flipped on its head yet again, as another ailment threatens to derail us and leave us wondering what next.

Therefore, we need to manage the symptoms that we have as best as we can and maximise our physical, and mental health and well-being, keeping as active and fit as we can using a wide variety of ways which I’ll look at in a future post.

In the meantime you may like to check out the following;

The Importance of Thankfulness 
How Can We Develop Joy?
Where will you find joy?
Joy in the Hard Times 
Learn to Relax 

You can also link in with other patients and caregivers through Rare Disorders NZ support groups to learn from your peers and share experiences and tips for living well.

For those of you with Scleroderma you can connect with the Scleroderma New Zealand Inc. which has support groups in Hamilton, Palmerston North, Wellington (which I’m involved in currently), Christchurch and Southland.

I have found these times encouraging and uplifting. They also have a Scleroderma facebook page for people with scleroderma and their families and friends here.

Alternatively, you can connect with Scleroderma Support & Education NZ via Facebook.

Keep safe and stay healthy everyone.

Blessings ’til next time 🙂

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Medicines crisis declared in NZ

The below article appeared on sunlive – The Bay’s News on Sunday entitled ‘Medicines crisis declared in NZ‘.

A campaign is underway to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand.

MyLifeMatters, a collective of patient advocate organisations representing more than 1 million patients with cancers, rare disorders, diabetes, and other life limiting conditions have this week launched the campaign.

“Kiwis are one diagnosis away from having to move to Australia to access medicines that are publicly funded elsewhere in the OECD. We are in a crisis and our politicians need to act,” says Patient Voice Aotearoa chair Malcolm Mulholland.

“Medicines are a core part of the backbone of healthcare, enabling patients to lead healthy and productive lives, however New Zealand remains at the bottom of the OECD without access to many medicines that are already part of standard international treatment regimes.”

Malcolm says New Zealanders’ ability to access new and breakthrough medicines lags well behind other comparable OECD countries, with New Zealand dead last, ranking 32nd in a list of 32 OECD countries for public funding of medicines.

The recent Medicines Landscape 2022/23 report is a stark reminder of just how big this issue is.

In April 2023, there were 109 applications waiting for funding on Pharmac’s Options for Investment List, with many medicines languishing for an average wait time of 7.7 years and longer.

“Compounding these concerns is the investment hole in the health budget that demonstrates the Government’s lack of commitment to reducing time to access new and breakthrough medicines as early as possible,” says Malcolm.

“The additional funding provided to Pharmac by the Government to fund new medicines or widen access was only provided for in the 2022/23 and 2023/24 years.

“To maintain access the same list of funded medicines, an additional $181 million dollars is needed, and this does not include funding for any new medicines.”

Malcolm says this could mean no new medicines will be funded until there is a commitment from Government to do so.

“The Treasury has already warned the Government twice in the Budget Economic and Fiscal Update (BEFU) about the funding which is missing from the health budget from 2024 onwards.”

The issues MyLifeMatters are highlighting they say need to be addressed are:

• Timely access to new and breakthrough medicines
• Patient-focused wellbeing benefits to be included in decision-making processes

“New Zealand’s Government must expedite pathways for evaluating and approving these treatments which can significantly improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system,” says Malcolm.

He says this is to improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system.

“Pharmac plays a pivotal role in the management of medicines access, with decisions primarily driven by costs and little consideration given to societal factors.”

He says there also needs to be an urgent and clear plan to implement the findings of the Pharmac Review to address the significant shortcomings in Pharmac’s performance.

“Many Kiwis are struggling to privately fund the medications they need, forced to leave New Zealand, or go without the treatment they desperately need.

“This burden is particularly hard on vulnerable communities, leading to adverse health outcomes, and reduced quality of life.”

Theresa Zame is a stage-four lung cancer patient who is self-funding her medicine that she needs for a productive, better quality of life.

“Our most vulnerable are suffering and dying prematurely, and the Government needs to both stop being so cost-focused around medicines, and also better value patient’s wellbeing and their families welfare,” says Theresa.

“If the rest of the OECD can do it, so can we.”

As the collective group MyLifeMatters is calling for timely access to new and breakthrough medicines.

“New Zealand’s Government must expedite pathways for evaluating and approving these treatments which can significantly improve patient outcomes, survival rates, and help to reduce the pressure on New Zealand’s overburdened health system,” says Malcolm.

MyLifeMatters says there needs to be an increased investment and timely access to medicines to cater to the growing healthcare needs of the New Zealand population, and to keep up with the rest of the OECD.

The group is also calling for patient-focused wellbeing benefits to be included in decision-making processes on medicines investment by the New Zealand Government.

“Together, MyLifeMatters believes it’s possible to shape a future where all Kiwis have timely and equitable access to medicines as early as possible, politicians must act now,” says Malcolm.

The mission of MyLifeMatters is to raise awareness, promote policy changes, and engage politicians to ensure that there is equitable access to essential medicines for all Kiwis.

At the heart of there campaign lies a shared vision: everyone in New Zealand should have access to affordable and essential medicines.

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I for one know the stress and burden caused through having to fund my own medications for Scleroderma with associated Interstitial Lung Disease (Scl-ILD), as we have to self fund Rituximab.

Rituximab unfortunately is not a funded treatment option for my condition, even though it can be used for other autoimmune diseases and disorders that have similar symptoms as mine 😦

We’ve had to go down this path as the regular funded treatment was proving to be ineffective in keeping my symptoms in check. We have since had to increase the occurrence of this additional medical regime on a four monthly basis to help with my situation. Which initially could have cost us approximately $50,000+ per year.

Thankfully our chemist found a biosimilar medication in Riximyo which will do the job just as well. However, this still equates to about $12,000 per year. We are extremely grateful for the assistance that my workplace provides through a health provision in helping to cover the lion’s share of this expense.

Tragically though over time this medicine has the potential to become ineffective as well and a medication that has been specifically designed to assist those with Scl-ILD in the US, is not funded currently within NZ, and would cost approximately $80,000 (at this stage).

It is currently on the Pharmac Funding Priority List but as noted above the average wait time could be anywhere between another 5 years or more before it is approved, if it is approved. Let’s just hope and pray that my condition doesn’t progress any further.

You can keep up to date with my health condition here.

Rare Disorders NZ (RDNZ) is currently working with Manatū Hauora on the development of a national rare disorder strategy, which they’ve long been calling for to ensure the health system recognises, and equitably meets the needs of, the 300,000 New Zealanders living with a rare disorder.

Find out more about the strategy here.

However, RDNZ are alarmed that despite Manatū Hauora working for the past year on this, the rare disorder community has not once been mentioned as a priority population group in a recently released cabinet paper [‘Achieving Pae Ora Through Primary Care’] on the Minister of Health’s vision for primary and community healthcare in Aotearoa. For more information about this concern read this article.

The following article was also written for the New Zealand Herald which may be of interest to many in the Rare Disease Community – MyLifeMatters calls for new medicines, urgent Pharmac investment

Blessings ’til next time 🙂

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