The Health Wrap: COVID, women’s health, the costs of managing chronic conditions, and respect for “a magnificent legacy”

*** Aboriginal and Torres Strait Islander readers are cautioned that this post mentions and contains images of people who have passed ***

After a well-deserved summer break, Dr Lesley Russell is back with a bumper edition of The Health Wrap – providing updates and analysis on COVID, women’s health, the multidimensional nature of healthcare costs, medicines policy and more.

The quotable?

The Government has been downplaying COVID-19 now for a year or so.

But we are still actually still in a global pandemic, and we are still seeing successive waves of COVID-19, which aren’t particularly predictable. There’s this downplaying about how bad things are, and they are bad.”

Lesley Russell writes:

The Health Wrap is back after a wonderful summer break.  Hopefully readers also had a chance to relax and enjoy the very weird summer weather.

I enjoyed some wonderful days hiking and swimming on Kangaroo Island.

Snake Lagoon Trail, Flinders Chase National Park, which follows Rocky River to the Southern Ocean. No snakes were sighted.

COVID-19 – four years on

Do you remember what life was like four years ago, as the first cases of SARS-CoV-2 infections were reported and we soon realised that the world was about to be engulfed in a pandemic?

An ABC News article serves to remind us of those early days in lockdown. In this article people are quoted as saying “I don’t really think about it that much anymore.”

Sadly, that also seems to be the approach adopted by Australian governments, and specifically the Albanese Government.

But with school holidays over and more people returning  to workplaces, Australians need to be taking precautions against what could be another “substantial” wave of COVID-19.

In case you missed this recent article in The Conversation:

Both the NSW and Victorian Governments are reminding people to take precautions, but in what I would describe as a “very wimpy” way.

Some strong, authoritative guidelines about mask-wearing and isolation when infected are important; instead, we had Dr Kerry Chant, NSW Chief Health Officer, simply asking people who test positive to wear masks in supermarkets and minimise contact with vulnerable people.

Getting up-to-date data about COVID-19 in Australia is increasingly difficult.

As I write this (on 6 February), the Department of Health and Aged Care website only has data about hospitalisations and ICU admittances (7-day rolling averages) to 8 January, data about deaths to 10 January, and data about infections in residential aged care to 10 January.

Interestingly, an ABC News Story, published on 23 January, has data (cited as from the Department of Health and Aged Care) to 22 January (perhaps my googling skills are failing?). It shows more than 26,000 active cases of COVID-19 on that date, with the caveat from the Commonwealth Chief Medical Officer, Professor Paul Kelly, that this is almost certainly an under-estimate.

The figures for deaths from COVID-19 are not available for December 2023 or January 2024, but in November there were 164.

In this article, Kelly warns one of the reasons why we are seeing another wave is because of waning immunity (when was the last time you saw a government advertisement encouraging getting a booster?).

In case you missed this article in The Conversation:

There has been a five-fold increase in COVID-19 cases in aged care homes over the past six months. On the last report, at least 459 facilities were affected by an outbreak and there were 32 deaths in a week.

Data released last month by the Department of Health and Aged Care reveal only 30.3 percent of aged care residents had received a booster dose in the last six months and 68.1 percent since January 2023.

Like many working in this space, Professor Adrian Esterman, an epidemiologist at the University of South Australia, is alarmed by the Government’s lack of response.

“This is a priority area to get the residents up to date with their booster shots and yet the actual percentage who are up to date is going backwards,” he said.

“The Government has been downplaying COVID-19 now for a year or so,” he said. “But we are still actually still in a global pandemic, and we are still seeing successive waves of COVID-19, which aren’t particularly predictable. There’s this downplaying about how bad things are, and they are bad.”

In a recent article, ABC’s Casey Briggs discusses how Australian Governments have dismantled the reporting system/s for COVID-19 (driving people like me nuts!) and how that might not be all bad.

He cites the call from a group of public health experts, published in the  journal Emerging Infectious Diseases  that this is a “critical time” to review disease surveillance practices, suggesting an “integrated model of surveillance” that considers multiple respiratory viruses.

But to date there is no such response from Australian governments – perhaps they are waiting for the Australian Centre for Disease Control (ACDC) to do this work?

And I guess the ACDC will also be responsible for ensuring that Australia’s public health and healthcare gaps are plugged before the next pandemic, as urged by the Grattan Institute in their submission to the COVID-19 inquiry.

If incentives are needed to drive Australia to prepare for the next wave of COVID-19 or the next pandemic, a report from South Africa (from the same Stellenbosch laboratory that discovered the Omicron variant) about a new lineage of SARS-CoV-2 should be the catalyst. This genetic divergence is as different from Omicron as it was from Delta and as Delta was from Beta.

The virus has not ceased evolving – even if our response to it has.

See this X/Twitter thread:

A new focus on Australian women’s health

Victoria will hold an Australian-first inquiry into women’s pain after a survey of women in the state found two in five respondents suffered from chronic pain that was often dismissed as “normal” by medical professionals.

The Premier, Jacinta Allan, who suffers from endometriosis, said while chronic pain affects a higher proportion of girls and women than men, women are less likely to receive treatment.

This inquiry is part of a larger effort by Victoria to address women’s health needs. The $153.9 million Women’s Health Program will include:

  • 20 Women’s Health Clinics and an Aboriginal-led Women’s Health Clinic.
  • 100 women’s health specialist scholarships.
  • Nine sexual and reproductive health hubs, and primary care sentinel practices.
  • Grants to women’s health organisations to establish support groups for women living with chronic disease and menopause.
  • The establishment of a Women’s Health Research Institute.

Additional research to understand the differences that women have in diagnosing, treating and managing their health compared to men.

Victoria has also released the results of the 2023 Women’s Health Survey, Listening to Women’s Voices.
At the federal level there is the National Women’s Health Strategy 2020-2030. The 2022-2023 Budget provided funding to improve health services for women and support the implementation of this strategy.

This included $58.1 million to support women experiencing endometriosis, with $16.4 million to establish endometriosis and pelvic pain general practice clinics, and $1.6 million to establish a National Women’s Health Advisory Council to monitor and report on implementation of the strategy.

The clinics are established through Primary Health Networks. There is more information here. This DoHAC webpage includes a link to a progress report that goes nowhere but there is a 2023 Endometriosis Progress Report, available here.

There is information about the National Women’s Health Advisory Council here. It is chaired by Assistant Minister for Health and Aged Care, Ged Kearney.

Listen to Kearney talk about how the council will address medical misogyny here.

Also an article in Croakey, March 8, Systematic approaches needed to address wide-ranging inequities affecting women’s health, addresses these issues.

The costs of healthcare

Recently with a group of friends I was discussing the time and money and organisational skills needed to stay healthy.

For example, for me in 2023 there was: a mammogram (and there was a follow-up required); an annual check from the dermatologist (with a return for an excision); shots for COVID-19, flu, and shingles; an eye test (necessary for my driver’s licence); a colonoscopy (once every five years); and several visits to the GP, primarily for referrals and for statements that I am fit enough to drive and to undertake some of the long-distance hikes I do (the joys of ageing!).

I’m (luckily) pretty fit and enjoy good health, with no chronic illnesses. Data from the Australian Institute of Health and Welfare indicates that 80 percent of Australians aged 65 and over have at least one chronic condition and 28 percent have three or more.

So I can only imagine how much time it takes for someone with, for example, a cardiac condition, diabetes, or arthritis (or all three), to manage their illnesses. It’s a form of out-of-pocket costs that is rarely mentioned or measured.

A recent study from the United States (where healthcare is even less coordinated than it is here, although referrals are not required for specialist care) finds that senior Americans (65 and over) spend an average of three weeks every year on doctor’s appointments and other healthcare outside their homes.

Of those 21 “healthcare contact days,” 17 involve ambulatory services, such as office visits with primary care doctors or specialists, testing and imaging, procedures, treatments and therapy. The remaining four days included time spent in an emergency room, hospital, skilled nursing facility or hospice. Half of the test and imaging days were not on the same days as office visits.

About 11 percent of these people spend 50 or more days each year (nearly one day a week) obtaining routine health care.

Factors associated with more ambulatory contact days included younger age, female sex, White race, higher income, higher educational attainment, urban residence, and more chronic conditions.

Regardless of medical need, these findings represent “substantial time, efforts and cost, especially for older adults and their care partners,” the researchers wrote.

I found some earlier research that highlights some segments of the American population bear a greater burden around time issues.

A Harvard study found that in 2010, people in the United States spent 1.1 billion hours seeking healthcare for themselves or for loved ones. That time was worth US$52 billion.

This research analysed the difference in time burden by race, ethnicity, and socioeconomic status. While all groups spent the same 20 minutes face-to-face with physicians, African Americans and Hispanics spent approximately 25 percent longer when seeking healthcare, a result of increased travel, wait, and administrative times.

A 2015 study confirmed this discriminatory difference, finding that the  total time burden was 25 to 28 percent longer for racial/ethnic minorities and unemployed individuals.

I went looking for Australian information on this issue and found a 2012 paper from former colleagues at the Australian Primary Health Care Research Institute – a literature review of the time spent on health-related activities associated with chronic illness.

They found that both patients with chronic illness and informal carers may be spending two hours a day or more on health-related activities. Certain conditions such as diabetes are associated with higher time use.

An Australia-wide survey done in 2013 asked how much time is spent by older adult informal carers who assist people with chronic illness both daily on the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs.

In this study most carers also had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands, of between 8.5 and 10 hours a day devoted to HRA.

It’s salutary to realise that these carers spent more time on caring for others than on caring for their own health.

The authors of these papers called for more research to understand the time demands of self-management, particularly for those affected by chronic illness. Clearly such research is needed even more today.

Medicines Australia and PBS reforms

Despite its central importance to Australians healthcare, there is comparatively little public scrutiny of the operations of the Pharmaceutical Benefits Scheme (PBS) – likely a reflection of how well it works.

However, for some time now a Health Technology Assessment (HTA) Review has been underway as a commitment under the strategic agreements the Morrison Government signed with Medicines Australia in September 2021 (although it’s interesting to note that these did not go into effect until 1 July 2022 to 30 June 2027).

The HTA Review is looking at: current policy and methods used by the Pharmaceutical Benefits Advisory Committee (PBAC) to assess new medicines for listing on the PBS; “contemporary research” (I’m not sure what this means); and relevant methodologies and purchasing practices used by comparable international jurisdictions. You can read more about the focus here.

The review is described as “independent”, but given that the review committee members include the Chair of the PBAC and the CEO of Medicines Australia, that’s a descriptor that is open to challenge.

The review was supposed to be completed by June 2023, with implementation of the findings of the review by July 2024. That schedule is clearly lagging.

A collection of research and analysis papers prepared for the review is here.

An Options Paper for reforms (170 pages) went up on the Office of Health Technology Assessment consultation hub on 25 January. The consultation will close on 23 February.

Alongside this, a new Enhanced Consumer Engagement process is to be developed to incorporate consumer and patient perspectives earlier in the PBAC process when assessing a new medicine for listing on the PBS.

The co-design work on this did not commence until November 2023. The first communique of the Enhanced Consumer Engagement Process Working Group is here. It appears from this that the Working Group is proceeding without any information on reform recommendations from the HTA Advisory Committee.

Meanwhile, Medicines Australia is engaged in some concerted but subtle lobbying of consumers and patient groups.  An undated media release (I think it’s from June 2023) urges it’s “Time to ‘seize the day’ on PBS reform to realise economic and social goals”.

To back this up, Medicines Australia commissioned a report “Funding Innovative Medicines” that states: “Reforms to Australia’s Pharmaceutical Benefits Scheme (PBS) and National Immunisation Program (NIP) are needed so that Australian patients can access medicines and vaccines like other similar countries.”

You can see where this is headed. The Medicines Australia media release picks up this thread.

“The data [from the report] reinforces that Australia is failing to provide timely and fair access to many advances medical option from and antiquated system that is not powered to respond quickly to innovation.

“The Health Technology Assessment (HTA) Review now underway must result in an adaptable model equipped to deal with the pace of change.”

There seems to be a public awareness campaign to go along with this – something called “Stronger PBS”. It’s fascinating that this uses criticism of the New Zealand Pharmac: “The New Zealand medicines system highlights the strength of the Australian PBS, and the need to protect our crucial public health program for the future.” The Stronger PBS campaign has been rolled out on LinkedIn and Twitter / X.As noted by my colleague Charles Maskell-Knight in his Zap column, Medicines Australia must be confident of the outcomes of the HTA review because its pre-budget submission calls for the Government to “commit to funding the reforms that will come out of the HTA Review to give Australians faster access to new medicines”.

Meanwhile, the Inquiry into Price Gouging and Unfair Pricing Practices, conducted by Professor Allan Fels for the Australian Council of Trade Unions, has highlighted concerns about pharmaceutical prices.

Pharmaceuticals prices are kept high by ‘ever greening’ and ‘pay for delay’ agreements, and a mandatory reporting scheme should be implemented in relation to originator and generic agreements to improve the detectability of pay for delay agreements similar to the United States, he reported.

Evergreening is a strategy of obtaining multiple patents that cover different aspects of the same product, typically on improved versions of existing products. Some of these may be genuine innovations that improve consumer wellbeing, while others may be technical changes that have unclear consumer impact. The ability to obtain multiple patents on a product over a period of many years effectively extends the term of exclusivity that the patent holder obtains.

Pay-for-delay agreements refer to patent holders (originators) paying generic manufacturers to keep the generic product off the market beyond the scope of a patent (both in terms of a generic that may not breach the original patent or preventing entry after the expiry date) as part of a settlement agreement to resolve a court action.

Measles – still a threat

Measles has recently been cropping up regularly in the medical media, so I went investigating.

In the United States nearly two dozen cases of measles have been reported since December 1, according to an alert from the US Centers for Disease Control and Prevention. International travel, coupled with declining global vaccination rates, is probably behind this spate of cases, experts say.

The CDC noted in its alert that the majority of the measles cases “were among children and adolescents who had not received a measles-containing vaccine, even if age eligible.” In 2023 about 92 percent  of US children have been vaccinated against measles, mumps and rubella (MMR) by age two, below the federal target of 95 percent.

There’s a good history of MMR vaccination and associated issues in the United States here. These days we must also include the anti-vaccination stances pushed by former President Trump, Robert Kennedy Jr and others.

In the United Kingdom, a measles outbreak continues to widen: as of January 18, there have been 216 confirmed cases and 103 probable cases reported since October. The UK Health Security Agency has declared a national incident to signal the growing public health risk.

The World Health Organization (WHO) has warned of an “alarming rise” in cases of measles in Europe. In 2022, there were 941 reported cases of measles in the WHO European region. In 2023 there were over 42,000 cases.

These increases are shocking, all the more so given that just a few years ago measles was considered eliminated in all these countries.

The World Economic Forum states that “globally, the spread of misinformation about vaccine safety has contributed to the largest sustained drop in the uptake of childhood vaccinations in thirty years. There is no endemic, ongoing circulation of measles in Australia, but there is importation of cases from overseas, so high rates of MMR vaccinations are needed to keep the population safe. In the week of 17-24 January, three cases of measles were identified in overseas travellers in Victoria.

In Australia 93.26 percent of one-year olds and 91.22 percent of two-year olds were fully vaccinated. The coverage for all children at age five is 94.04 percent. This is below the WHO target of 95 percent and vaccination rates in one-year olds are decreasing.

You can track childhood vaccination rates by Primary Health Network here.

There’s an interesting new publication from Professor Julie Leask and colleagues that elicited the views of well-informed community members via community juries on the public acceptability of using childhood vaccination mandates in Australia. The juries included parents who had not vaccinated their children.

The results indicate that, even when informed of potential risks, harms, costs, and benefits, members of the public will, on balance, support childhood vaccine mandates – but with clear caveats.

All the juries endorsed using the least restrictive or coercive means to encourage vaccination –incentives or education campaigns ahead of penalties such as school exclusions. The overriding view was that a direct burden should be placed on parents rather than children and that mandates should be designed to avoid inequitable impacts on less advantaged groups in society.

Conscientious objection was seen as acceptable provided that overall vaccination coverage remains high.

The best of Croakey

I would like to highlight the launch of Croakey Health Media’s year-long effort to highlight Medicare at 40 (#Medicare40Years) and efforts to reform middle-aged Medicare into a healthcare system delivering for all Australians for the next forty years.

Bookmark this link to follow related stories, and Croakey also has established a Twitter list to follow.

A tribute to a special Elder

Like so many Australians, I was deeply saddened to learn of the death of Dr Lowitja O’Donoghue AC CBE DSG, and I would like to pay tribute to her life and work and her legacy here.

I was lucky enough to meet her several times in the course of my work, and she was always warm, full of grace, and quietly determined.

I particularly like this photo of her which echoes – or is echoed – in the portrait of her by Robert Hannaford in the National Portrait Gallery.Also see this extensive compilation of tributes published at Croakey.

The good news story

As we celebrate Medicare’s 40th birthday, it seems appropriate to highlight the great work of Dr Mike Freelander, a paediatrician and now the federal member for Macarthur.

As noted by Health Minister Mark Butler, Dr Freelander is a “living story of Medicare” – he opened his clinic on the 1st of February 1984 – the first day of Medicare.

Croakey thanks and acknowledges Dr Lesley Russell for providing this column as a probono service to our readers. Follow her on Twitter at @LRussellWolpe.

Previous editions of The Health Wrap can be read here.

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