Oral retinoids are a type of medicine used to treat severe acne. They’re sold under the brand name Roaccutane, among others.

While oral retinoids are very effective, they can have harmful effects if taken during pregnancy. These medicines can cause miscarriages and major congenital abnormalities (harm to unborn babies) including in the brain, heart and face. At least 30% of children exposed to oral retinoids in pregnancy have severe congenital abnormalities.

Neurodevelopmental problems (in learning, reading, social skills, memory and attention) are also common.

Because of these risks, the Australasian College of Dermatologists advises oral retinoids should not be prescribed a month before or during pregnancy under any circumstances. Dermatologists are instructed to make sure a woman isn’t pregnant before starting this treatment, and discuss the risks with women of childbearing age.

But despite this, and warnings on the medicines’ packaging, pregnancies exposed to oral retinoids continue to be reported in Australia and around the world.

In a study published this month, we wanted to find out what proportion of Australian women of reproductive age were taking oral retinoids, and how many of these women were using contraception.

Our results suggest a high proportion of women are not using effective contraception while on these drugs, indicating Australia needs a strategy to reduce the risk oral retinoids pose to unborn babies.

Contraception options

Using birth control to avoid pregnancy during oral retinoid treatment is essential for women who are sexually active. Some contraception methods, however, are more reliable than others.

Long-acting-reversible contraceptives include intrauterine devices (IUDs) inserted into the womb (such as Mirena, Kyleena, or copper devices) and implants under the skin (such as Implanon). These “set and forget” methods are more than 99% effective.

The effectiveness of oral contraceptive pills among “perfect” users (following the directions, with no missed or late pills) is similarly more than 99%. But in typical users, this can fall as low as 91%.

Condoms, when used as the sole method of contraception, have higher failure rates. Their effectiveness can be as low as 82% in typical users.

Oral retinoid use over time

For our study, we analysed medicine dispensing data among women aged 15–44 from Australia’s Pharmaceutical Benefit Scheme (PBS) between 2013 and 2021.

We found the dispensing rate for oral retinoids doubled from one in every 71 women in 2013, to one in every 36 in 2021. The increase occurred across all ages but was most notable in young women.

Most women were not dispensed contraception at the same time they were using the oral retinoids. To be sure we weren’t missing any contraception that was supplied before the oral retinoids, we looked back in the data. For example, for an IUD that lasts five years, we looked back five years before the oral retinoid prescription.

Our analysis showed only one in four women provided oral retinoids were dispensed contraception simultaneously. This was even lower for 15- to 19-year-olds, where only about one in eight women who filled a prescription for oral retinoids were dispensed contraception.

A recent study found 43% of Australian year 10 and 69% of year 12 students are sexually active, so we can’t assume this younger age group largely had no need for contraception.

One limitation of our study is that it may underestimate contraception coverage, because not all contraceptive options are listed on the PBS. Those options not listed include male and female sterilisation, contraceptive rings, condoms, copper IUDs, and certain oral contraceptive pills.

But even if we presume some of the women in our study were using forms of contraception not listed on the PBS, we’re still left with a significant portion without evidence of contraception.

What are the solutions?

Other countries such as the United States and countries in Europe have pregnancy prevention programs for women taking oral retinoids. These programs include contraception requirements, risk acknowledgement forms and regular pregnancy tests. Despite these programs, unintended pregnancies among women using oral retinoids still occur in these countries.

But Australia has no official strategy for preventing pregnancies exposed to oral retinoids. Currently oral retinoids are prescribed by dermatologists, and most contraception is prescribed by GPs. Women therefore need to see two different doctors, which adds costs and burden.

Rather than a single fix, there are likely to be multiple solutions to this problem. Some dermatologists may not feel confident discussing sex or contraception with patients, so educating dermatologists about contraception is important. Education for women is equally important.

A clinical pathway is needed for reproductive-aged women to obtain both oral retinoids and effective contraception. Options may include GPs prescribing both medications, or dermatologists only prescribing oral retinoids when there’s a contraception plan already in place.

Some women may initially not be sexually active, but change their sexual behaviour while taking oral retinoids, so constant reminders and education are likely to be required.

Further, contraception access needs to be improved in Australia. Teenagers and young women in particular face barriers to accessing contraception, including costs, stigma and lack of knowledge.

Many doctors and women are doing the right thing. But every woman should have an effective contraception plan in place well before starting oral retinoids. Only if this happens can we reduce unintended pregnancies among women taking these medicines, and thereby reduce the risk of harm to unborn babies.

Dr Laura Gerhardy from NSW Health contributed to this article.

Antonia Shand, Research Fellow, Obstetrician, University of Sydney and Natasha Nassar, Professor of Paediatric and Perinatal Epidemiology and Chair in Translational Childhood Medicine, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.

What’s the difference? is a new editorial product that explains the similarities and differences between commonly confused health and medical terms, and why they matter.

Former US First Lady Michelle Obama revealed in her memoir she had a miscarriage. UK singer-songwriter and actor Lily Allen has gone on the record about her stillbirth.

Both miscarriage and stillbirth are sadly familiar terms for pregnancy loss. They can be traumatic life events for the prospective parents and family, and their impacts can be long-lasting. But the terms can be confused.

Here are some similarities and differences between miscarriage and stillbirth, and why they matter.

Let’s start with some definitions

In broad terms, a miscarriage is when a pregnancy ends while the fetus is not yet viable (before it could survive outside the womb).

This is the loss of an “intra-uterine” pregnancy, when an embryo is implanted in the womb to then develop into a fetus. The term miscarriage excludes ectopic pregnancies, where the embryo is implanted outside the womb.

However, stillbirth refers to the end of a pregnancy when the fetus is normally viable. There may have been sufficient time into the pregnancy. Alternatively, the fetus may have grown large enough to be normally expected to survive, but it dies in the womb or during delivery.

The Australian Institute of Health and Welfare defines stillbirth as a fetal death of at least 20 completed weeks of gestation or with a birthweight of at least 400 grams.

Internationally, definitions of stillbirth vary depending on the jurisdiction.

How common are they?

It is difficult to know how common miscarriages are as they can happen when a woman doesn’t know she is pregnant. There may be no obvious symptoms or something that looks like a heavier-than-normal period. So miscarriages are likely to be more common than reported.

Studies from Europe and North America suggest a miscarriage occurs in about one in seven pregnancies (15%). More than one in eight women (13%) will have a miscarriage at some time in her life.

Around 1–2% of women have recurrent miscarriages. In Australia this is when someone has three or more miscarriages with no pregnancy in between.

Australia has one of the lowest rates of stillbirth in the world. The rate has been relatively steady over the past 20 years at 0.7% or around seven per 1,000 pregnancies.

Who’s at risk?

Someone who has already had a miscarriage or stillbirth has an increased risk of that outcome again in a subsequent pregnancy.

Compared with women who have had a live birth, those who have had a stillbirth have double the risk of another. For those who have had recurrent miscarriages, the risk of another miscarriage is four-fold higher.

Some factors have a u-shaped relationship, with the risk of miscarriage and stillbirth lowest in the middle.

For instance, maternal age is a risk factor for both miscarriage and stillbirth, especially if under 20 years old or older than 35. Increasing age of the male is only a risk factor for stillbirth, especially for fathers over 40.

Similarly for maternal bodyweight, women with a body mass index or BMI in the normal range have the lowest risk of miscarriage and stillbirth compared with those in the obese or underweight categories.

Lifestyle factors such as smoking and heavy alcohol drinking while pregnant are also risk factors for both miscarriage and stillbirth.

So it’s important to not only avoid smoking and alcohol while pregnant, but before getting pregnant. This is because early in the pregnancy, women may not know they have conceived and could unwittingly expose the developing fetus.

Why do they happen?

Miscarriage often results from chromosomal problems in the developing fetus. However, genetic conditions or birth defects account for only 7-14% of stillbirths.

Instead, stillbirths often relate directly to pregnancy complications, such as a prolonged pregnancy or problems with the umbilical cord.

Maternal health at the time of pregnancy is another contributing factor in the risk of both miscarriage and stillbirths.

Chronic diseases, such as high blood pressure, diabetes, hypothyroidism (underactive thyroid), polycystic ovary syndrome, problems with the immune system (such as an autoimmune disorder), and some bacterial and viral infections are among factors that can increase the risk of miscarriage.

Similarly mothers with diabetes, high blood pressure, and untreated infections, such as malaria or syphilis, face an increased risk of stillbirth.

In many cases, however, the specific cause of pregnancy loss is not known.

How about the long-term health risks?

Miscarriage and stillbirth can be early indicators of health issues later in life.

For instance, women who have had recurrent miscarriages or recurrent stillbirths are at higher risk of cardiovascular disease (such as heart disease or stroke).

Our research has also looked at the increased risk of stroke. Compared with women who had never miscarried, we found women with a history of three or more miscarriages had a 35% higher risk of non-fatal stroke and 82% higher risk of fatal stroke.

Women who had a stillbirth had a 31% higher risk of a non-fatal stroke, and those who had had two or more stillbirths were at a 26% higher risk of a fatal stroke.

We saw similar patterns in chronic obstructive pulmonary disease or COPD, a progressive lung disease with respiratory symptoms such as breathlessness and coughing.

Our data showed women with a history of recurrent miscarriages or stillbirths were at a 36% or 67% higher risk of COPD, respectively, even after accounting for a history of asthma.

Why is all this important?

Being well-informed about the similarities and differences between these two traumatic life events may help explain what has happened to you or a loved one.

Where risk factors can be modified, such as smoking and obesity, this information can be empowering for individuals who wish to reduce their risk of miscarriage and stillbirth and make lifestyle changes before they become pregnant.

More information and support about miscarriage and stillbirth is available from SANDS and Pink Elephants.

Gita Mishra, Professor of Life Course Epidemiology, Faculty of Medicine, The University of Queensland; Chen Liang, PhD student, reproductive history and non-communicable diseases in women, The University of Queensland, and Jenny Doust, Clinical Professorial Research Fellow, School of Public Health, The University of Queensland

This article is republished from The Conversation under a Creative Commons license. Read the original article.