Expert profile
Meet the woman who has relentlessly campaigned for seven years to change the infertility cover open medical aid schemes are obliged to provide. Saskia Williams, we salute you!
YOU CAMPAIGN FOR MEDICAL SCHEMES TO PAY FOR INFERTILITY TREATMENT. CAN YOU GIVE US THE BACKGROUND?
Medical aid schemes have to fund treatment for a list of 270 prescribed minimum benefits (PMBs). Infertility is on that list. But according to a decision by the Council for Medical Schemes (the CMS), it is the only condition that is excluded from having to be treated under the PMBs. This means your medical aid scheme has to fund the costs associated with the diagnosis of infertility, but they do not have to fund its treatment.
YOU OBJECT TO THIS
Yes. The World Health Organization classifies infertility as an illness. One in six couples suffer from it worldwide. It is among the four most prevalent illnesses in people of childbearing age in the world. It is a real issue for hundreds of thousands of people in South Africa.
BEFORE WE TALK ABOUT PRIVATE HEALTHCARE, IS INFERTILITY TREATMENT COVERED UNDER STATE HEALTHCARE?
There are infertility treatment facilities in three state hospitals nationwide: Steve Biko Academic Hospital in Pretoria, and Tygerberg and Groote Schuur hospitals in Cape Town. That’s it. If you live elsewhere, you can’t access these services. And because of demand, waiting lists are long. One thing couples with infertility do not have is time, because a woman’s fertility declines sharply from her mid-thirties.
IT’S ALSO AN EXPENSIVE ENDEAVOUR…
Yes. One IVF cycle can cost you between R30 000 and R100 000 for one cycle, depending on where you go, what exactly your condition is, how old you are, what interventions are needed, and so on.
OKAY, SO THAT’S THE BAD NEWS OUT OF THE WAY. TELL US ABOUT IFAASA?
I started the Infertility Awareness Association of South Africa (IFAASA) along with nine others in 2013. It is registered as a non-profit patient advocacy group and charity. We rely on donations and sponsorships to fund our initiatives. I am the only member from 2013 still on the board, along with two other nonexecutive directors.
We all met on internet infertility boards, which were mostly anonymous at the time, and where we shared our infertility journeys. We spoke freely and it evolved into a sort of support group where we’d even met in real life. One woman, Meggan Zunckel in Cape Town, tried to take on the CMS decision (to exclude infertility as a fundable PMB) in 2010, but she didn’t get very far. She then asked Johannesburg members to attend the Discovery Medical Scheme AGM in 2013 to make a factual and heartfelt proposal that they consider funding the treatment of infertility (knowing full well that they didn’t have to fund it, because the CMS decision stood). With stars in our eyes at the time we thought we could fight for it.
IT DIDN’T HAPPEN OVERNIGHT.
On the contrary. We hit a brick wall in 2013. The following year, IFAASA gathered thousands of proxies and presented at the 2014 Discovery AGM. A small admission was made: Discovery members could use their savings for their treatments (subject to t’s & c’s). We continued with a public awareness campaign from 2015 onwards. The IFAASA fertility videos posted on social media proved a hit. Infertile couples applied pressure to their medical aids wanting to know why it was the only illness on the list that is excluded when it comes to the payment for treatment. It wasn’t long after that I received a call from Discovery wanting to meet.
With Dr Sulaiman Heylen and Dr Jack Biko, president and vice-president of SASREG, we had countless calls and Zoom meetings with Discovery throughout lockdown. (SASREG is the Southern African Society of Reproductive Medicine and Gynaecological Endoscopy.)
One in six couples suffer from it worldwide. It is among the four most prevalent diseases in people of childbearing age in the world. It is a real issue for hundreds of thousands of people in South Africa.
THAT FEELS MASSIVE. WHY DO YOU SAY IT’S ONLY THE BEGINNING OF THE PROCESS?
Mostly because infertile couples or women are fighting against the clock, so two years is too long to wait. By the time you are at a point in your career where you can afford to be on a comprehensive or executive plan and have discovered you are infertile, you are usually in your midto late thirties. You are already feeling helpless and excluded in so many ways, and the terms and conditions related to this limited cover may exacerbate these feelings. That’s the feedback I’ve had from IFAASA followers, certainly! Many patients felt we’d failed them.
THIS YEAR, YOU MADE A CHINK IN THE RULES.
Yes, Discovery has decided that, if a member has been on a comprehensive or executive plan for two years, it will cover two cycles of assisted reproductive therapy – including invitro fertilisation, intra-uterine insemination, embryo transfer and intra-cytoplasmic sperm injection – starting in 2021, at selected centres. But call first to find out exactly what will be covered before you start treatment!
BUT YOU HAVE WORKED SO CEASELESSLY!
I understand from my own experience the state of mind many of these people must be in. If you are infertile, you have to cope with so much sadness, hope, frustration and despair.
Even though infertility is fortunately becoming more openly discussed these days, we didn’t talk about our treatment when we were doing it. For some, the platitudes of friends and family, the “just relax or just adopt” brigade, adds to the guilt and grief they already feel. There are people who fail to understand why you don’t want to attend a baby shower or can’t be happy about someone’s pregnancy announcement.
THIS FEELS LIKE AN INTRUSIVE QUESTION, BUT WHERE DID YOUR INFERTILITY JOURNEY LEAD?
My husband and I have one son through adoption, but sadly we lost a pregnancy, our daughter, at 24 weeks.
WHAT’S YOUR DAY JOB?
I help manage our family-owned property company, leading a team of 25 estate agents as a sales manager.
HAVE YOU ALWAYS BEEN PERSISTENT?
Yeah, I’m a red-headed Scorpio, so I was born stubborn. I’m attracted to brokenwing birds, my mom said, and I always try to help people, sometimes to my own detriment. I can also be a bit tactless and blunt – but my heart is in the right place!
WHAT ARE YOUR NEXT STEPS?
Now we welcome conversations with the other open medical aids. They run the risk of losing members if they don’t follow Discovery’s example. We also have a great legal team that is prepped and ready to challenge the matter in court, to argue that one cannot only exclude infertility treatment from the PMB list. However, we will need the public’s support with such a case.
HAVE ANY OTHER MEDICAL AIDS COME ON BOARD YET?
CAMAF have funded fertility treatment for years, but it’s not an open medical scheme.
WHAT OPTIONS DO INFERTILE COUPLES, SINGLE WOMEN OR SAME SEX COUPLES HAVE IF THEY WANT TO START FAMILIES?
You can look at IUI, IVF, egg or sperm donation, adoption or surrogacy, depending on your needs. But your first step is always to see a specialist ASAP. Don’t waste time.
If you are infertile, you have to cope with so much sadness, hope, frustration and despair.
HOW CAN WE LEARN MORE?
Go to the IFAASA YouTube channel – we have talks on all versions of family building and on educating yourself about your diagnosis. You lose so much control in infertility, control over your body, control over your future. But having knowledge gives you back some control. ●