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Women share their stories of desperate HRT shortage

An increasingly chronic shortage of hormone replacement therapy [HRT] medicine for women in perimenopause and menopause is adversely affecting many Wairarapa residents.
LUCY COOPER reports.

Walking into a Wairarapa pharmacy to collect her latest HRT oestradiol patch prescription, Caroline* [48] “felt like a drug addict”.

“I said as much to the pharmacist: ‘Look, I know it’s not your fault, but I need this. I’m on this. I can’t come off this. I don’t want to go backwards in my life and the quality of my life. I want to keep moving forward.’

“And I suddenly felt this feeling of shame.”

Caroline knows she is not alone: “I found that really sad, that it’s not just myself, but there’s so many women throughout the country that are in the same position.”

The availability of oestradiol patches – which deliver the hormone oestrogen, which starts to decline before menopause, through the skin – has been variable for years.

The situation has become acute for women in Wairarapa, and they are feeling the pinch.

The region’s doctors, pharmacists, and the women who need the patches to manage perimenopause symptoms such as night sweats, brain fog, joint pain, mood swings, and insomnia, are frustrated, confused, and scrambling for solutions.

For women who rely on HRT to alleviate debilitating symptoms, Pharmac’s latest supply update issued on May 15 offers little comfort.

It reported shortages in transdermal patches across all dosages – 25 micrograms [mcg], 50mcg, 75mcg and 100mcg – and for each of the three main brands: Sandoz [supplier of the Estradot brand], Viatris, and Estraderm.

For some products, such as 25mcg of Viatris, the “next shipment to be confirmed”. Other shipments are up to two months away from dispatch.

The reasons for the supply squeeze are many and complex, including a massive increase in demand for HRT globally and in Aotearoa.

Domestic demand has suddenly more than doubled – growing from 1.2 million patches dispensed in 2020-21 to more than 3 million patches in 2022-23.

Vague and unspecified “manufacturing issues” and rationing to try and ensure fair distribution are also contributing to the current shortage.

Other countries have access to funded oestrogen gel as an alternative, but Aotearoa does not.

Caroline’s story

Looking back, Caroline thinks her perimenopausal symptoms started a couple of years ago, but she didn’t join the dots until she started talking to a friend who had “gone through the perimenopause experience itself and also happens to be a nurse”.

“We were catching up, and I was talking about having problems with my periods and their frequency and how uncomfortable they were and the hot flashes and the mood swings and the cold sweats and not being able to sleep. She just said to me, ‘I think you’re perimenopausal’.”

Following her friend’s advice, she went to her GP, making sure to do her research beforehand.

“I had heard anecdotally that not many GPs have a good understanding of perimenopause or menopause, and women are advised or encouraged to be as best informed as they can be before going to the doctor,” she said.

“I went to my doctor and said, ‘I think I’m perimenopausal, and here’s why’, as opposed to saying, ‘I have these symptoms and I don’t know what’s wrong with me’.”

Her doctor “didn’t disagree” and recommended she try low-dose HRT.

“I was so hopeful by that stage that any type of help would alleviate my pretty awful symptoms, I didn’t hesitate to give it a go.”

Caroline’s first script was fulfilled by her local pharmacist “no problem”, but her most recent visit to the chemist was a different story.

Now on a 100mg dose, she was told “that pharmacies aren’t able to fill that”.

“They only have a 75mcg patch, which, if you’re on 100mcg, isn’t enough, And if you’re on 50mcg, you need to cut a piece off and you have to measure out these little patches into quantities of 25mcg yourself.

“Or, unfortunately, if you can’t get it, you can’t get it.”

Caroline’s frustration and concern is palpable.

“Having been on HRT and recognising the benefits of it, I’m really not looking forward to perhaps going back to having all of those symptoms be part of my everyday life again.

“I know I’m in this [perimenopausal] phase, the doctors agree I’m in this phase, and there’s a medication that can help you get through this phase, but it’s not available.

“It’s massively disappointing and concerning.”

Sarah’s story

Sarah* [53] was “on top of her game” when the “crash” came about five years ago.

She’d recently completed postgraduate study and was at the “top of the pay scale” in a job she found rewarding and fulfilling.

But then the insomnia kicked in, and the “crippling” brain fog.

“That was the most upsetting symptom for me, the really significant brain fog, and just sensing that I couldn’t manage it all.”

Like Caroline, it took a conversation with a friend and “a couple of years of struggling” for Sarah to understand she was experiencing perimenopause.

Her friend put her onto a podcast, “Postcards from Midlife”, which discussed HRT: “That was it. I decided, ‘I’m going to go and get some help’.”

Since being prescribed oestradiol patches, Sarah has found access to 50mcg Estradot, manufactured by Sandoz, has “ebbed and flowed”, and she’s had to “shop around”, which takes its toll.

“I’m one of those people who’s had to ring round all the pharmacies to see who’s got any and then get your script redirected to them. It’s a lot of running around. You’re having to take time away from work to do research and pick things up.”

The uncertainty and need to make compromises are anxiety-inducing, Sarah said.

“It makes me feel anxious, and I start to try and eke out my patch. I leave it on a bit longer, and I think, ‘I’ll just stretch it out just in case’. I’ll leave it on another day.”

The thought of having no access to HRT patches at all is untenable for Sarah.

“It’s upsetting to have to keep advocating and be scared each time we go to the doctors that they are going to try and take you off it. That’s how I feel. And who wants to go back to that again – you know, a shadow of yourself?”

Rachel’s story

For some, like South Wairarapa woman Rachel [46], the uncertainty surrounding HRT patch supply is enough to indefinitely delay plans to explore whether it could be an option.

For Rachel, the perimenopause included symptoms include brain fog and anxiety, low confidence, weight gain, Achilles and calf issues, and broken sleep.

And while she feels strongly oestradiol patches could alleviate many of her symptoms, she feels she has little option other than to “muddle through for a bit longer”, until supply issues are addressed.

The frustration she feels is not only for herself but for other women in her situation and those left in limbo between prescriptions.

“I didn’t want to start HRT and then have to stress out about not being able to get my supply and have to faff around like all these poor women are doing, cutting up their patches and everything else.

“You just feel the utter frustration of it – if this was a men’s health issue, there would be no question of it being sorted.”

A doctor’s perspective

Rachel’s perspective is one Dr Alison Payne, a GP and women’s health specialist based in Martinborough, has sympathy with: “You don’t see this with Viagra – a far less essential drug!”

At the menopause clinic she runs at Martinborough Health Centre, Dr Payne sees “women with symptoms, who have done their research, have shelled out to come and see me, and want to either discuss or try HRT”.

But instead of being able to offer immediate assistance, she’s having to explain the practical drawbacks.

“I spend time explaining that there may be a short supply, they may be given a different strength of patch in half – which is not what you should be doing – and that they will only be permitted a month’s supply rather than three months.

“You just don’t need that.”

For Dr Payne, the impacts on women related to inconsistent – or non-existent – HRT supply are compounded by broader issues of inequities in access to women’s health and the “misconception or preconception that HRT is a bit of a luxury”.

“This is about a hormone deficiency,” she said. “Oestrogen protects women from osteoporosis, reduces the risk of heart disease and stroke, and may well protect against dementia; as women live a lot longer after menopause than they used to, this is important to women, society, and a failing health service.

“The breast cancer risk is hugely exaggerated – drinking a big glass of wine every night is more of a cancer risk.”

“We’re not talking about a life-threatening illness, but these symptoms significantly affect people’s day-to-day lives as well as those around them.”

Dr Payne’s overall feeling is one of “frustration”.

“I’m frustrated on behalf of women, I’m frustrated for myself because of having to redo prescriptions to help the pharmacists out, and I’m really frustrated for the pharmacists because it creates so much needless extra work for them.”

The pharmacist

A local pharmacist told the Times-Age the shortage issues go right to the top of the supply chain.

“We are not told of when some [HRT products] become short, as much as our wholesaler is struggling with the whole shortage situation as well. So it’s not just us, it’s actually our wholesaler,” she said.

“I’m pretty sure that this isn’t just a New Zealand situation. I’m pretty sure that there’s a worldwide problem going on.”

The pharmacist confirmed that advice to women caught out by the shortage includes halving higher dose patches, “which the manufacturers have said is okay”.

Another solution is to double up smaller dosages to reach the required dose – for example, a patient requiring a 50mcg patch could apply two 25mcg patches.

However, this has cost implications, the pharmacist explained.

“The unfortunate thing about doubling up means that it’s no longer funded. So a double-up becomes a cost to the patient.”

Costs are “highly variable”, depending on brand and dosage.

The pharmacist said juggling supplies and trying to help women navigate the uncertainty is “very stressful. Unfortunately, it’s incredibly vague for all of us.”

“It just shouldn’t be like this”

For Caroline, the HRT shortage underscores the apparent lack of regard that exists when it comes to perimenopausal health.

“If this was a medicine for children, it wouldn’t be acceptable. If it was for asthmatics or diabetics, it wouldn’t be acceptable,” she said. “But for some reason, this idea that, ‘Oh, she’s just at that stage in her life’ – it is so derogatory. It’s so insulting for women.”

Added to this is a sense that a postcode lottery is in play.

“The last thing any woman would want to feel is that it depends on where you live and what pharmacy you go to, which side of the tracks are you on,” Caroline said.

“Availability to a funded drug that alleviates these awful symptoms for women should be as accessible for one person as it is for the next, and it’s such a shame that it’s not.”

All three women who spoke to Times-Age for this story agreed that access to different funded treatment options, such as oestradiol gel, would ease the bottlenecks in the supply chain, and ease the stress and worry that currently surrounds accessing necessary medication. Dr Payne agreed.

“My big frustration is why can’t we have the tried and tested oestradiol gel – and funded? This shouldn’t just be for wealthy women,” she said.

The oestrogen gel pump has 64 ‘pumps’ in a pack and costs $37.50.

“For a woman on 25mcg patches, it would last two months,” Dr Payne said, “And for a woman on 50mcg patches, it would last a month – great if you can afford it, but many women can’t.”

According to its May supply update, Pharmac has issued a Request for Proposals [RFP]for the supply of transdermal oestradiol products.

But relief in the form of a fully funded gel appears still some way off.

“Once the RFP closes, the next step will be to evaluate the bids received and put forward a proposal to fund an oestradiol gel for public consultation. Any funding decisions will be subject to the bids received from suppliers and available budget,” the statement said.

*Some names have been changed to protect the privacy of the individuals involved.

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