As Minister Bill Shorten today outlines planned changes to the NDIS (listen to disability policy analyst El Gibbs for some context and timely calls for action, and see her tweets of his speech), Dr Lesley Russell investigates the healthcare needs of people with disability.
Her latest column also reports on new findings on child neglect and mistreatment, and COVID and babies, as well as bringing news from the United States on the pandemic and yet more political battles over abortion rights and women’s access to reproductive health.
Don’t miss some musical innovation from a multi-talented scientist.
The quotable?
A history of childhood neglect and mistreatment underpins many health and wellbeing issues in later life.”
Lesley Russell writes:
A recent report from the Australian Institute of Health and Welfare (AIHW) looks at mortality patterns among people using disability support services. The results are shocking and distressing.
People using specialist disability services in Australia had a mortality rate 4.7 times as high as the general population.
The rate of potentially avoidable deaths was 3.6 times as high for service users compared with the general population, with coronary heart disease and suicide being the leading causes of deaths deemed potentially avoidable.
This highlights the need to provide targeted support and health interventions for those groups of people with disabilities with high rates of potentially avoidable deaths.
The report uses data about deaths of people who accessed disability specific support services, funded under the National Disability Agreement (NDA), from 1 July 2013 to 30 June 2018. The data are not representative of all deaths of people with disability, but rather those who had access to and were successful in applying for NDA funded support services over the five-year study period.
[As an aside, as noted by AIHW: without data linkage it is not possible to examine in detail how people with disability use healthcare services, with the exception of self-reported survey data. Healthcare data collections generally have no “flag” to identify the disability status of service recipients or patients. Should this be the case?]
The increasing difficulties Australians face in accessing healthcare services (availability, affordability, transport and parking, cultural appropriateness) are magnified for people living with disability; in addition, they may face inaccessible buildings and discrimination by health professionals. The AIHW data highlight some of these issues.
As an example of what is needed, a volunteer group of healthcare professionals in Western Sydney has recognised the problems faced by people with complex disabilities (and their carers) and have set up a “one-stop shop” for their care, using sedation where necessary.
This amazing effort was recently highlighted by ABC News – you can read more here. More needs to be done to develop interest around Australia in providing this model of care (and in getting governments to fund it).
People living with disability are one of the Australian Government’s priority populations for suicide prevention due to the high rates of suicide and self-harm. However, it is clear not enough is being done to support people at risk.
An American study found that people with a disability were more than twice as likely to report suicidal ideation, suicide planning without attempt, and suicide attempt compared with people without disabilities.
A fact sheet from the Centre of Research Excellence in Disability and Health highlights that both unemployment and poor mental health are more common among men with a disability – factors that place them at increased risk for suicidal ideation.
Yet employment rates for people with disability lag dreadfully. Working-age people with a disability have a much lower employment rate (48 percent) than those without disability (80 percent)
The employment rate also varies by disability group. People with sensory and speech disability have the highest employment rate (50 percent) while those with psychosocial disability have the lowest (26 percent).
It is fairly easy to draw links between the increased suicide rate for people living with disability and the rising suicide rate among older Australians, especially men.
For assistance
Lifeline 13 11 14 www.lifeline.org.au
Suicide Call Back Service 1300 659 467 www.suicidecallbackservice.org.au
beyondblue 1300 224 636 www.beyondblue.org.au
13Yarn 13 92 76 13yarn.org.au
Kids Helpline 1800 551 800 kidshelpline.com.au
QLife 1800 184 527 https://qlife.org.au/
Check-In (VMIAC, Victoria) 1800 845 109 https://www.vmiac.org.au/check-in/
Lived Experience Telephone Line Service 1800 013 755 https://www.linkstowellbeing.org.au/
Childhood neglect and mistreatment
A study, commissioned by the National Health and Medical Research Council and the Federal Government, and just published in a special edition of The Medical Journal of Australia, paints a disturbing picture of the extent of childhood maltreatment (ie sexual abuse, physical abuse, emotional abuse, neglect, and exposure to domestic violence) and shows how common this is in Australia.
The participants were randomly selected using computer-generated mobile phone numbers:
- 40 percent reported witnessing domestic violence before the age of 18.
- 32 percent said they’d experienced physical abuse.
- 30 percent reported emotional abuse.
- 29 percent reported experiencing sexual abuse.
- 9 percent said they’d experienced neglect.
Girls were twice as likely as boys to experience sexual assault and 1.5 times more likely to experience emotional abuse and neglect. Children who are victims were almost three times as likely to have generalised anxiety disorder, severe alcohol use disorder and major depressive disorder.
They’re also almost five times as likely to have PTSD, with girls particularly vulnerable to emotional abuse and mental disorders.
A history of childhood neglect and mistreatment underpins many health and wellbeing issues in later life.
ABC News ran a story which you can read here.
An accompanying editorial at MJA InSight makes the point that child maltreatment is not something that happens to a small number of disadvantaged children, nor does its impact cease when the maltreatment stops. Preventing maltreatment is everyone’s responsibility.
At a time when Opposition Leader Peter Dutton is trying to use the mistreatment and abuse of Indigenous children in Alice Springs as a political issue, we would do well to see this as an issue that impacts all levels of Australian society.
Dangers of SARS-CoV-2 for infants
It’s impossible to write an edition of The Health Wrap without writing something about COVID-19 and its consequences. Too much of the news is sobering and/or disturbing but it does highlight the amazing advances that have been made in research.
In a study published in Pediatrics, researchers have found that COVID-19 infection has crossed the placenta and caused severe brain damage in two newborns.
The babies were born to mothers who became COVID positive in the second trimester during the Delta wave in the United States and delivered a few weeks later.
Both infants negative for the virus at birth but had significantly elevated SARS-CoV-2 antibodies in their blood, indicating that either antibodies crossed the placenta, or the virus crossed and the immune response was the baby’s.
As the infants’ bodies grew, they had very small head circumference. Unlike some babies born with the Zika virus, these babies were not microcephalic at birth. Brain imaging on the two babies indicated significant brain atrophy, and neurodevelopment exams showed significant delay.
One of the infants died at 13 months and the other remained in hospice care at time of manuscript submission.
This is worrying news, but it is important to note that, while there appears to be a higher incidence of pregnancy-related complications in SARS-CoV-2 positive mothers, such as miscarriage, restricted foetal growth, or still-birth, the majority of newborns delivered from SARS-CoV-2 positive mothers test negative following delivery, suggesting that there are protective mechanisms within the placenta.
While infection during pregnancy can impart anti–SARS-CoV-2 antibodies to infants, antibody levels quickly wane during the first six months.
The authors of the paper discussed above note that future longitudinal studies are needed to study the impact of timing of in utero SARS-CoV-2 infection on placental inflammation, as well as the long-term consequences on the developing foetal brain.
Meanwhile, there is good news from the Doherty Institute for Infection and Immunity where new research has found that pregnant women display a strong immune response to SARS-CoV-2 infection, comparable to that of non-pregnant women.
Research from the United States shows that the incidence rate of positive SARS-CoV-2 testing among infants born to people with SARS-CoV-2 infection during pregnancy during the period of Omicron predominance was five times higher than the preceding period. This finding aligns with other evidence of reduced protection against Omicron from previous infection with other SARS-CoV-2 variants.
Increased transmissibility of the Omicron variant to infants (who are ineligible to receive COVID-19 vaccination), raises the importance of preventing SARS-CoV-2 transmission through other means, such as vaccination of pregnant and postpartum women.
United States calls an end to the pandemic
President Biden has signed a Republican-authored bill terminating the national emergency over the COVID-19 pandemic, a month before the White House had said the president would unilaterally end national emergency declarations related to the pandemic.
It is nearly three years since the United States imposed sweeping pandemic measures to curb the spread of the illness. (It’s worth noting that 1,746 Americans died from COVID-19 in the week ending April 7.)
The COVID-19 public health emergency was put in place in 2020 by then-President Donald Trump. Biden has repeatedly extended the measure, which allow millions of Americans to receive free tests, vaccines and treatments.
This means that many Americans must now pay for testing, vaccines and treatments and, as I wrote in the previous edition of The Health Wrap, millions are now no longer able to access Medicaid health insurance and expanded support for food stamps.
It’s pretty easy to see where this will likely lead – to more Americans going without needed interventions for COVID-19 infections.
For example, both Moderna and Pfizer plan to increase prices from the government rate of around US$25 per dose to as much as US$130. This in a country where only 69 percent of the population has had two doses of vaccine and only 34 percent have received a booster shot.
The Kaiser Family Foundation has a number of papers that outline the consequences; you can access them here.
There is some good news to report. The Biden Administration has announced it is launching a US$5 billion program to accelerate development of new coronavirus vaccines and treatments, seeking to better protect against a still-mutating virus, as well as other coronaviruses that might threaten us in the future.
“Project Next Gen” is the follow-up to “Operation Warp Speed,” the Trump-era program that sped coronavirus vaccines to patients in 2020 and will take a similar approach to partnering with private-sector companies to expedite development of vaccines and therapies.
Scientists and public health experts have called for such an initiative, warning that existing therapies have steadily lost their effectiveness and that new ones are needed.
Project NextGen has three primary goals, which were laid out in a roadmap released in February:
- Develop a nasal vaccine to prevent infection as well as severe disease
- Develop longer-lasting vaccines
- Create “broader” vaccines that protect against all variants and several coronaviruses.
The plan also includes funding to develop monoclonal antibodies resistant to new variants. Antibodies were highly effective treatments earlier in the pandemic but have not been able to keep up with the virus as it evolved, and these treatments are no longer available.
Legal battles over abortion drug continues
The political battles over abortion rights and women’s access to reproductive health continue across the United States. This is a follow-up to the piece I wrote in the March 20 edition of The Health Wrap.
Texas judge Matthew Kacsmaryk, an antiabortion Trump appointee, has ruled that the Food and Drug Administration’s approval of the drug mifepristone in 2000 was flawed and must be suspended. This decision would remove mifepristone – which accounts for about 53 percent of medically induced abortions – across the entire United States.
He also cited a 1873 law, claiming that it makes it illegal to ship abortion drugs nation-wide. The so-called Comstock Act made it illegal to mail what at the time was deemed “obscene, lewd, lascivious,” such as pornographic publications and “every article or thing designed, adapted, or intended for producing abortion, or for any indecent or immoral use.”
The judge stayed the ruling for a week to give the government time to respond.
In the 23 years since its approval, the drug has been widely proved to be safe, and this is the first time a court has ordered the FDA to remove a drug from the market. This decision opens the door to politicising a whole array of essential medicines on the basis of political ideology, not science.
President Biden has vowed to fight the ruling and the federal Department of Justice has already filed an appeal.
On 13 April the 5th US Circuit Court of Appeals halted parts of the Kacsmaryk court order that was set to go into effect on April 14, while affirming other parts.
Less than an hour after Kacsmaryk’s ruling, federal judge Thomas O Rice in Washington state issued an injunction prohibiting the FDA from pulling mifepristone from the market.
With two opposing rulings in place, the Department of Justice has acted quickly to take these issues to the US Supreme Court (SCOTUS).
At the Department of Justice’s request, Supreme Court Justice Samuel Alito on Friday issued an administrative stay of the Texas court ruling on the abortion medication mifepristone until the end of the day on Wednesday, April 19.
The temporary move ensures that the abortion pill will remain available while giving SCOTUS more time to consider the issue. Given the SCOTUS ruling on Roe v Wade last year, there is some risk in this.
There was ten years of data from Europe prior to FDA approval of mifepristone and since then there has been another 23 years of very safe use. The mortality from mifepristone is estimated to be five per one million users; maternal mortality in the United States is 329 per one million live births.
It’s interesting to see Big Pharma’s reactions.
More than 400 of the pharmaceutical industry’s top executives spoke out against the ruling made by Judge Kacsmaryk in a letter published by the New York Times. You can read the letter here.
They claimed the ruling “ignores decades of scientific evidence and legal precedent”.
But PhRMA, the major lobby group for the pharmaceutical industry and the top spending lobbying group in the healthcare sector, is staying quietly on the sidelines.
It will send a statement to reporters upon request, stating: “The FDA is the gold standard for determining whether a medicine is safe and effective for people to use. While PhRMA and our members are not a party to this litigation, our focus is on ensuring a policy environment that supports the agency’s ability to regulate and provides access to FDA-approved medicines.”
In the middle of all this, Florida lawmakers – led by Florida Governor and likely presidential candidate Ron DeSantis – have legislated to ban abortions after six weeks of pregnancy.
The prohibition would be among the most restrictive in the country, and Florida would no longer be a destination for women from across the Deep South seeking abortion.
Cholera threat grows, especially in Africa
The World Health Organization is now reporting the global risk of cholera as very high. Last month four new countries reported cholera outbreaks, bringing the total number of affected countries to 24 and threatening more than one billion people.
WHO also noted with concern the “alarmingly high mortality rates” associated with recent outbreaks in countries that have been cholera free for decades.
The case fatality rate has crept up to 1.9 percent globally and 2.9 percent in Africa, which are the highest fatality rates for cholera in decades.
Some 13 outbreaks are in Africa, with the rest in the Middle East, the Indian subcontinent and the Caribbean.
The WHO voiced particular concern about outbreaks in Malawi and Mozambique, where Storm Freddy killed hundreds and is severely hampering any outbreak control. Close to 1,700 people died from cholera in Malawi in the first three weeks of March.
The WHO statement said: “The overall capacity to respond to the multiple and simultaneous outbreaks continues to be strained due to the global lack of resources, including shortages of the oral cholera vaccine, as well as overstretched public health and medical personnel, who are dealing with multiple disease outbreaks and other health emergencies at the same time.”
Cholera can kill within hours, but it can be effectively and inexpensively treated with oral rehydration solution, supplemented with antibiotics and intravenous fluids for more severe cases.
Ultimately, stopping cholera is about water and sanitation. In the affected countries this will require major multisectoral efforts that will only be possible with high-level political support and investment.
You can read more in this article in the Bulletin of the World Health Organization.
Best of Croakey
With the federal budget just weeks away, it’s timely to bookmark this link for Croakey’s coverage. Also join the Croakey team in using the hashtag #HealthBudget2023 to share related information across the socials.
The good news
Here’s a great example of a multi-talented scientist!
Professor Jenny Graves, an award-winning geneticist, has been a chorister for many years. She has sung The Creation, a Haydn oratorio, many times. The oratorio depicts and celebrates the creation of the world as described in the Book of Genesis.
Jenny and co-librettist Leigh Hay decided to rewrite the oratorio from a science point of view. Their work is called Origins.
It will be performed as a cultural event highlight at the International Genetics Congress in Melbourne on 18th July 2023.
BTW: I know you are not supposed to remark on people’s age, but Jenny Graves is a lively 82 years old. She’s an inspiration!
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.
