Hawke’s Bay doctor campaigns for change amid acute shortages.
[As published in September/October BayBuzz magazine. In September, responding to pressure, Pharmac finally announced that oestrogel would be funded as of 1 Nov.]
Kelly Brown is a 52-year-old mum from Napier. She’s also one of thousands of Kiwi women who uses Hormone Replacement Therapy (HRT) in the form of estrogen patches to cope with the symptoms of menopause. Brown wrote the letter reproduced below to New Zealand’s drug buying agency Pharmac in June, out of absolute frustration she could no longer regularly access her prescribed HRT.
Good morning,
I am contacting you as I am deeply concerned about the lack of HRT in our country. As a menopausal woman I can tell you, to turn up to get your much-needed medicine only to find out it’s not available is outrageous!
It’s not a rare disease. Millions of women use HRT to help with menopausal symptoms… If a Covid-19 vaccine patent can be shared among companies to increase supply, surely the same can happen for HRT.
I would like to know what you are doing to fix this? We rely on this medicine to live healthy, ’normal’ lives – it’s an utterly awful time of life for women’s health.
Signed, an angry, disappointed menopausal woman
A shortage of HRT started as far back as 2020, as stocks declined in New Zealand and around the world, but in recent months the situation has become acute. Specifically, the shortage relates to estradiol patches – a stick-on patch that contains a hormone called estradiol. Estradiol patches are also known as HRT or estrogen patches.
Estrogen patches are applied to the skin and release hormones into the body during perimenopause (the transition to menopause) and menopause. The HRT shortage, which is due to continue until at least 2025, has left women vulnerable to the return of a raft of psychological and physical symptoms, and in the most extreme cases, suicidal.
Like so many other women, Brown experienced symptoms that are often overlooked or written off as “mum fatigue”. There was the poor sleep, brain fog and the mood swings that could quickly escalate to anger. “I just thought I’m an older mum – I’m in my late 40s,” she says. Then the hot flushes started. “I’d be in a meeting and I would get this horrible sensation. it would go from my toes all the way up to my head and all I could think was ‘oh my god, can anyone else see what I’m feeling?’.”
She went to see her GP and started using estrogen patches, combined with progesterone tablets to regulate her hormones. The medicine has had a significant impact on Brown’s day-to-day life. “The hot flushes went, I felt brighter, I had more energy… It definitely was pretty life-altering for me.”
What is HRT?
Menopause starts when a woman hasn’t had a period for 12 months, and the years leading up to this are perimenopause, when the body is producing fewer hormones. The first clues of perimenopause are often psychological and can come 10-12 years before your last menstrual period, so it’s completely reasonable for a woman to begin perimenopause in their 30s. As a woman’s body gets close to releasing its last eggs it is desperately trying to produce estrogen, causing hormone levels to surge and drop.
Perimenopause is the most emotionally and physically challenging time of a woman’s life because her hormones change significantly, causing marked symptoms. Depression, anxiety, brain fog, mood changes, pain, sleep problems, tinnitus, itchy skin, hot flushes, bladder infections and dry eyes are all common symptoms.
HRT is used to treat these symptoms and there are several different types available, including pills, gels and patches. Estrogen patches, where the hormone is delivered via the skin (transdermally) is acknowledged as the safest form of estrogen. In New Zealand it’s also the most widely prescribed, as it’s the only transdermal estradiol patch that’s funded.
These small adhesive patches are applied to the lower stomach or top of the buttocks, where they release hormones through the skin and into the bloodstream. The patches can improve life significantly for women, says Dr Samantha Newman, who is a GP and runs a clinic in Napier specialising in women’s health.
Not just a nice-to-have
There are no official figures, but an estimated 80,000 people in New Zealand use estradiol patches. In addition to perimenopausal and menopausal women, it is also used by the transgender community and for a range of other conditions such as hormonal migraines and osteoporosis.
Traditionally, women were often told they couldn’t go on HRT until they’d had 12 months without a period. Even then, HRT was used to treat hot flushes only and for the shortest amount of time, at the lowest possible dose. But that view simply isn’t correct, says Newman.
In fact, anxiety is one of the most common symptoms of perimenopause. “For many people who use them it is a lifesaving medication. It is not a lifestyle choice.”
Often women have been on a long journey to even start HRT because they didn’t realise their symptoms were perimenopause or menopause, GPs missed the symptoms, or they were misdiagnosed.
Brown can relate, saying her own journey to HRT took some time. She didn’t know she was in perimenopause as the changes were incremental and she blamed it on getting older, which she now knows wasn’t true – “Age does not stop you from being able to deal with what life hands you.”
She works hard to keep herself as fit and healthy as possible – exercises an hour a day, eats a keto diet, and limits her alcohol intake. But Brown can’t control her hormones without medication. HRT has made a “massive difference” in her life, she says. Menopause is a medical condition that needs to be taken seriously, says Brown.
What’s behind the shortage?
Demand for HRT has increased massively. In the 2020/21 financial year the annual volume of patches used in New Zealand was 2.7 million. Three years later, the figure is 4.04 million, and demand is expected to keep growing. Contributing to this is an increase in education about menopause, with more women starting HRT younger and using it for longer.
There are also manufacturing and transport problems. These include unspecified ‘manufacturing issues’, supply-chain issues with soybean products, not enough factory development and shipping problems.
Estrogen patches are in short supply worldwide, but it’s more marked in New Zealand because there are no other funded options of transdermal estradiol. Because stocks are limited, suppliers of different brands of patches are rationing them out to pharmacies to try and keep distribution fair. However, it means when a woman turns up to her pharmacy her usual patch might not be available or in her prescribed strength.
When questioned for this article, Pharmac referred BayBuzz to their website. It says they recognise the supply of estradiol patches is very limited and availability can change rapidly and varies around the country. “We want to acknowledge the stress this supply issue may be causing. We are taking every measure to ensure that people can continue to access this treatment,” the website says.
However, healthcare specialists say Pharmac was slow to act when it knew there were supply problems with estradiol patches and failed to ensure enough alternatives were available.
Inconsistent supply, navigating alternatives
Since the shortage began, Newman has received hundreds of prescription requests from patients desperately trying to access their HRT. When those requests first started coming in, Newman would call pharmacies to get patients their medication – some driving up to 40 minutes to different pharmacies to get it. Until recently she was getting 10-20 requests for repeat prescriptions a day.
Patients have been forced to use patches that differ from their usual brand because it’s all that’s available, which they might react differently to. Sometimes women have to cut patches to get their correct dose because there’s only one strength available, pay extra for alternative options, or go without.
Anecdotally, the shortage has created something of an underground market, with women swapping medication to get their usual prescription. Some women are registering with more than one doctor to get multiple prescriptions and stock up on supplies, because they’re fearful of running out.
For some patch users the shortage has brought back debilitating mental, emotional and physical symptoms. They are struggling to work, sleep, having hot flushes, and have started taking antidepressants again, and for the women who were suicidal before starting HRT, they are terrified of returning to that place.
For Brown, the thought of getting her symptoms back is distressing. At the beginning of this year she noticed it was getting harder to access her prescription. Previously she renewed her prescription every three months, but that changed to a maximum of one month’s supply. Sometimes the pharmacist could only offer whatever patches were available, meaning Brown would get a different brand she wasn’t used to. Often she would be at the pharmacy before 8am to try and get her prescribed patches “because once they run out of their daily supply they run out”. Brown says she’s been lucky that for the most part she’s been able to get her prescribed patches, despite the shortage. But not everyone has been so fortunate.
There are other options available, including estradiol gels. These are not funded and cost $40-$60 per bottle, on top of seeing a GP to get the prescription. This can be a good option for some patients, offering a more consistent supply while getting the continued benefits of estrogen. However, a lot of healthcare providers, GPs and pharmacists aren’t comfortable prescribing and dispensing the gels because they’re not familiar with how it’s used, says Newman. It’s often left patients doing their own research to find other options.
On its website, Pharmac says it has been sourcing alternative brands of patches and is consulting on funding estradiol gel, Estrogel. If the proposal goes ahead, this would be available from November.
Impact
Generally patients have been really understanding, says pharmacist and owner of Gilmours Pharmacy in Havelock North, Liz Dixon. But it’s a difficult time for patients, pharmacists and everyone in the supply chain, who has been impacted by shortage.
Gilmours has 270 patients who use estrogen patches and that number will continue to grow, says Dixon. At times, frustrated women come into the pharmacy to get their patches, but the pharmacy can’t always source them. “For some people that’s dropping them off a cliff. Because you’ve finally got stable, you have anxiety around making sure you stay on a good medication that works for you,” she says.
Dixon, who has been a pharmacist for 35 years, says the shortage has put pressure on frontline staff at the counter. “You understand these women are anxious because you know they need the estrogen.” Dixon considers herself lucky to have fantastic staff who are good at calming down customers when needed. Often though, it takes a pharmacist to go out and assist the patient, which disrupts their workflow.
Estradiol patches are funded for a maximum of two patches per week. If pharmacies can only make up this dose by using a combination of two patches of different strengths, the patient must pay the extra cost.
For pharmacies, staff are spending extra time educating patients about the evolving changes, alternative options and creating labels to teach them how to cut patches to get the right strength – all unpaid. Pharmacies gets a 3.5% markup on the cost of medication and around $4-$5 for dispensing it, says Dixon. “We’re probably in negative equity for sure, managing estrogen patches.”
There are other impacts on the supply chain: GPs spending more time seeing returning patients and sending new prescriptions, pharmacists ringing wholesalers asking for medication to be released, wholesalers under huge pressure because every pharmacy is asking the same thing. “So it just keeps on going down the line.”
Campaigning for change
Newman says she feels a responsibility to stand up for her patients who desperately need a consistent supply of HRT. “For those who estradiol has given them their life back, or for those who got it to stop them falling off the cliff.”
Deeply concerned about the impact, Newman created a survey in June to gather data from HRT users around the country. More than 2000 women responded, with 95% saying they were experiencing difficulties as a result of the shortages. Some 84% reported a negative impact on their emotional wellbeing and 65% on their physical health. Of the respondents, 33% said HRT had enabled them to reduce or stop using pain medication and 17 % to reduce or stop using antidepressants. Respondents said being unable to consistently access HRT has left them struggling with anxiety, depression, and physical symptoms, making it hard for them to function on a daily basis.
Seeing the lack of education about the shortage for patients, pharmacies and practitioners, Newman also created a leaflet. This has been broadly used in Hawke’s Bay to help people navigate the changing situation and give patients the best chance of accessing what they need.
Newman has also teamed up with Director of Contentment PR & Communications Fiona Fraser, who is providing PR assistance pro bono. Fraser, an HRT user herself, wanted to help get media attention on the situation – “To raise the profile of the issue and try and get some change at a national level.”
She understands first-hand the positive flow-on effects for users and how much they can suffer without it. “I know what can happen to your body when you suddenly reduce the dose. It’s not pretty,” says Fraser.
The duo believe Pharmac was slow to act and the government should have managed the shortage better. “I’m amazed and astounded that this country hasn’t leapt on this medication to help keep women out of hospitals, to keep them away from doctors,” says Fraser. She wants to see a national campaign providing relevant information to users.
Women need more options available in New Zealand so they can choose what kind of patch or gel they want and have cost barriers removed, says Newman. “I think if you look at it from a public health perspective, 50% have had to spend additional money on getting medication which is not affordable for many people.”
She also wants more research and education on hormone treatment, greater funding for women’s health, support for users of hormones and equity for Māori.
Newman is lobbying David Seymour, as the Associate Minister of Health (Pharmac) to highlight the impact of the shortages and to stress the crucial importance of this medicine.
Royston Hospital is pleased to sponsor robust examination of health issues in Hawke’s Bay. This reporting is prepared by BayBuzz. Any editorial views expressed are those of the BayBuzz team.
