I cannot describe how much my husband and I were looking forward to our daughter Erika’s trip home to Arizona from Washington DC for Thanksgiving. When I saw her name come up on my phone the Monday before, I answered with joy: “We can’t wait to see you, Schmoo Bear” (what we had called her since she was a baby). But it was not Erika on the other end of the phone; instead it was her boyfriend, Sean. This is how our nightmare began.

We never had a chance to talk to Erika again. Our beautiful, caring, full of life, daughter, only just 24, had collapsed in her apartment, and had two heart attacks in the ambulance on the way to hospital. A doctor called to say we needed to get there as soon as possible. We took a flight at midnight and arrived by her side on Tuesday morning, but she was still in a coma.

One of the first things the doctors asked was whether Erika had been using hormonal contraceptives. When they found out she was using NuvaRing – a vaginal ring that releases so-called third-generation synthetic hormones – they removed it immediately. On the Wednesday before Thanksgiving we were shown scans of her lungs, which were full of massive blood clots. We were told NuvaRing was the cause of the pulmonary embolisms, heart attacks and subsequent irreversible brain swelling. On Thursday – Thanksgiving – they told us Erika wasn’t coming back. She died that day. It absolutely broke our hearts.

We considered ourselves well-informed people, Erika even more so, and yet we did not know NuvaRing had this risk. We soon learned that most people, including many doctors, are not aware of the potential dangers or even the symptoms to look out for. Erika had been prescribed NuvaRing four years earlier as a treatment for ovarian cysts – an off-label use.

Facebook Twitter Pinterest Karen Langhart with Erika. Photograph: Karen Langhart

From Sean we learned that Erika had felt her leg was sore, but thought it was from helping her friends move the previous weekend. She had had some congestion in her chest and thought she was coming down with a cold. Erika was always too busy to worry about such things. Unfortunately she did not know these are the symptoms of blood clots (leg pain) and pulmonary embolisms (congestion).

Birth control: share your experiences of hormonal contraception Read more

As we tried to make sense of Erika’s death, we learned that Food and Drug Administration hearings to discuss rising concerns about NuvaRing – as well as newer hormonal contraceptives, Yaz and Yasmin birth control pills, and the Ortho Evra patch – were scheduled two weeks from that fateful Thanksgiving. We told our lawyer that if we were to agree to pursue a legal case on behalf of Erika, first and foremost we would never “settle” her case. We were only interested in seeing the NuvaRing manufacturer, Merck, examined in a jury trial. He explained they were planning to fast-track Erika’s case in order to get to jury trial within the year, so the truth would come out and save lives. Terrified, but determined to help other young women, we agreed.

Unfortunately the attorneys involved in the class action lawsuit against Merck did end up settling out of court. These cases included 3,800 women, 83 of whom had died. We never got that jury trial we were promised. My husband and I refused to opt in to the $100m settlement agreement. Merck would not now be held accountable in a trial – to us this felt like watching Erika die all over again. The only thing that has ever mattered to us is the pursuit of truth in honour and memory of our beloved Erika.

In our opinion, Merck got away with murder, and continues to do so to this day. In 2011 NuvaRing made the company $623m; in 2013 it was $686m; and in 2014, after the settlement, Merck made a staggering $723m from it. Settlements are just the cost of doing business to Merck, all at the expense of women’s health and lives.

Merck, makers of NuvaRing Photograph: Justin Lane/EPA

During the FDA hearings, we heard the “argument” that NuvaRing, Yaz, Yasmin and the Ortho Evra patch all have “acceptable risk factors” because “it is more dangerous to be pregnant”. Our daughter was not an “acceptable risk factor percentage”, and neither are you or your daughter, wife, mother or friend. Erika was our 100%. It makes no sense when there are safer, effective alternative contraceptives available. Women do have other choices, if only they knew all the facts. To say these drugs have “acceptable risk factors” is an insult to women who have been injured and or who have died as a result of that acceptability.

In our opinion, Merck got away with murder

We talk about what happened to Erika to everyone we meet; we know it’s too important not to be shared. Erika’s classmate at university nearly lost her life after being told by four doctors her symptoms were not related to NuvaRing, though she later learned they were. As a result of an article written about Erika in Vanity Fair magazine and a CNN report, many women who have been injured and the families of women who have lost their lives have been in touch with us. There are too many incidents such as this that we have come across. We have stopped calling them coincidences.

It fills us with horror to think of all the women out there using NuvaRing and other risky hormonal contraceptives because they think there is no alternative for them but an unplanned pregnancy. If you are using it, please take the time to consider the ParaGard copper IUD, barrier methods, and the support of fertility-awareness methods.

We believe it is doing a huge disservice to women when media reports written about the risks of hormonal contraceptives end with the minimising message that it is more dangerous to be pregnant. This scares women into not exploring their options, and stops them from worrying enough to at least research the symptoms they need to look out for – information that could save lives. We believe the argument that NuvaRing and other hormonal contraceptives are harmless is dangerous and harmful in itself.

In memory of our daughter, we have established a foundation, InformedChoiceForAmErika.com. Our greatest hope is that more lives can be saved by the sharing of honest information.