Depo Provera and the news that broke earlier this year from Israel
19/02/2013 § Leave a comment
Marge Berer, Editor, Reproductive Health Matters
The news that broke earlier this year from Israel, that Ethiopian Jewish women had been given the injectable contraceptive Depo Provera without their knowledge or consent, awakened a strong feeling of déjà vu for me. This is where I came into this field, 35 years ago. Depo Provera had recently come onto the market for the first time. There were far fewer contraceptive methods available at the time and therefore far less choice. A method that a woman need only renew once every three months was a gift, from one perspective. One injection four times a year and no fear of unwanted pregnancy, no need to insert anything, wear condoms, remember to take a pill every day, get your partner’s agreement if he was opposed to using something. It was heralded as the solution to high levels of unwanted pregnancy.
At the same time, the potential for abuse of this method was obvious from the beginning, and abuse there was from paternalistic family planning providers. The “irresponsible woman”, who kept coming back for abortions, women who were poor, uneducated or with learning difficulties, who didn’t understand contraception or the importance of limiting births, were seen as the ideal candidates for Depo Provera. Middle class, more educated women stayed with the pill or got a copper IUD. HIV hadn’t appeared yet and condoms had become a thing of the past with the advent of the pill in the 60s. Diaphragms were what our mothers had had to use, with or without condoms, when there was nothing else. You had to be over 30 to be sterilised. Modern contraception was barely 20 years old and it was truly liberation for my generation, as it still is.
At the same time, however, the Dalkon Shield IUD, an IUD which was thought to increase the risk of upper reproductive tract infection because of the nature of its string (extending into the vagina for removal purposes), believed to facilitate the conduction of infection upwards, caused a hue and cry. Due to action by US feminist women’s health activists at the time, the method was withdrawn from the market and the reputation of all IUDs suffered for many years. Young women, who with hindsight and greater knowledge we can guess were getting sexually transmitted infections in large numbers as they experimented with sex, were not allowed to have IUDs because of this risk, when in fact, it was probably the sexual networking that was unsafe, as we learned when HIV hit the globe.
Even so, as part of a small but very vocal international feminist women’s health movement who supported women’s reproductive rights and opposed “population control”, I wrote a pamphlet called “Who needs Depo Provera?” in 1983, which was distributed pre-computer very widely both in the UK and other countries. Reading it again now, I am embarrassed to find how completely negative it was. It not only expressed fears of the potential for abuse of informed consent with the method, which remains justified. It was also so negative about the known side effects that anyone reading it would be completely put off, even if the method might have suited them. And it expressed exaggerated fears about the long-term safety of the method, which at the time was unknown because studies of long-term safety had not been conducted. We conflated the existence of negative side effects (to do with effects on menstrual bleeding, weight gain and mood changes) which do exist and may affect women, with an assumption that long-term safety was a problem. There was just enough evidence of possible issues to create this concern, but instead of expressing it with caution and uncertainty, in a scientifically justified manner, we used it to condemn the method.
Our action against Depo Provera, which included a protest outside the Committee on Safety of Medicines (because we were not allowed to give evidence or raise questions in their hearings on approval of the method) had many consequences. A good consequence was that long-term safety studies were initiated and became a standard part of contraceptive research and development. Another was that we contributed to the recognition of the importance of the concept of informed choice as regards using contraception, in place of “doctor knows best”. Informed choice, which the movement was demanding all over the world, became accepted in mainstream family planning and something that women expected. (I’m simplifying a very complex set of events over many years here, in order to be brief.)
On the negative side, however, there have been two lasting ill-effects. The first was exemplified in Zimbabwe at the time, where Depo Provera was pretty much the only available contraceptive. The government took the decision to focus its family planning programme around this method, whether due to the cost implications of a choice of methods, or because primary level family planning providers could most easily deliver it, or out of awareness that men did not understand the value of contraception and were widely opposed to it, and this method could not be removed by them, or because women were having more children than they wanted and the method is highly effective – most probably for all these reasons. Women in Zimbabwe accepted Depo Provera for its benefits and had begun to use it widely. That programme was very negatively affected by our actions in the UK and elsewhere. This was not a victory, as we believed at the time. On the contrary, it was a costly and terrible mistake.
Secondly, to this day, some feminist women’s health activists remain negative about Depo Provera and other longer-acting hormonal contraceptive methods, even though their benefits are clear, their side effects are no longer a secret and are explained to women more often, and their long-term safety has been studied and confirmed. Their opposition has been carried over to implants, IUDs, and medical abortion pills, in effect splitting the feminist women’s health movement into conflicting camps, and continues to have the very negative effect of limiting the still limited choices women have for preventing and terminating pregnancy.
On the other hand, the potential for abuse of injectables – because they are easy to administer in the context of other services without necessarily explaining what it is, and of implants because they require surgical removal, and of sterilisation because it is permanent and difficult or impossible to reverse – remains. Such abuses are not a thing of the past. They emerge regularly, as Lisa Hallgarten has shown in a recent blog, citing a number of RHM articles, whether due to pressure to meet targets, racist efforts to reduce births among ethnic minority populations, or discriminatory efforts such as to stop women with HIV from having children.
But there are some big differences between what was happening in the 20th century and what is happening now. The most important is that there is widespread recognition that these are abuses so that, when they emerge into the light of day, something is more often done (and sometimes done quickly) to stop them, including through public investigation, the courts and the UN human rights system – as has happened in Israel with Depo Provera and with sterilisation of HIV-positive women in southern Africa. (Though not quickly enough in Eastern Europe for Romany women, who got little support for a long time.) Mass abuse such as the sterilisation camps in India under Indira Gandhi in the 1970s, is hopefully far less likely. Still, the need for vigilance remains.
Secondly, the new “family planning initiative” in seeking to greatly increase access to contraceptives, which is a very good thing, knows it cannot afford to be tarred with the brush of failing to deliver informed choice. It is being very cautious about targets, even though it is calling for them. It says it supports informed choice and a rights-based approach, even though these are inconsistent with targets in the hands of a system that punishes health workers for failure to reach targets. This is an ongoing discussion; it may not be unalloyed progress, but it is definitely progress of a kind.