Why should infertility be so costly to medicate?
The signs hit with a vengeance and the 13-year-old girl could hardly comprehend what was going on.
Her periods came with severe cramps. She would feel dizzy and at times, she would faint.
Virginia Mbithe* knew something was wrong but she hardly expected it to lead her into a situation where she could find it hard to bear children.
She would later be found to have two conditions that limit a woman’s ability to give birth. But she is now a mother of twins.
How did she do it? More on that later.
When Ms Mbithe’s struggles began, doctors were largely unmoved, leaving her to believe that painful periods were a natural occurrence.
Years later, at 18, Ms Mbithe was diagnosed with endometriosis, a condition causing pain and potential infertility.
“My symptoms had been getting worse over time, and although the diagnosis provided some clarity, it also signalled the beginning of a difficult journey towards finding the right treatment,” she said.
Driven to learn more, Ms Mbithe educated herself about endometriosis and the possible link between the condition and infertility. This knowledge fuelled her determination to work closely with her healthcare team to manage her endometriosis effectively.
At 25, Ms Mbithe received another devastating diagnosis – polycystic ovary syndrome (PCOS) – which was another roadblock on her fertility.
After relocating to the United States to focus on her education, Ms Mbithe met a Kenyan doctor who is today her husband.
The couple faced immense pressure from their families to have a child.
“Some people in our community thought I was cursed or that I had done something wrong to deserve this. It was devastating,” Ms Mbithe recounted.
Desperate to have a child, the couple sought medical advice, prayers, and finally in vitro (outside of body) fertilisation, an expensive and complicated process.
Despite multiple rounds of hormone injections, blood tests and ultrasounds, Ms Mbithe and her husband remained steadfast in their journey towards parenthood.
Their perseverance paid off when, in November 2019, Ms Mbithe gave birth to twins.
“I couldn’t believe it when the doctor told us we were having twins,” she said. “It felt like all our prayers had been answered, and the pain of the past decade just washed away. It’s been a long and difficult journey, but seeing our twins now, I know it was all worth it. We fought together and never gave up.”
Ms Mbithe hopes her story raises awareness about endometriosis, PCOS, and infertility.
“No one should have to go through such difficult times at such a young age, or have to make such difficult decisions before you’re even an adult,” she said.
World Health Organisation
“I want to let other women know that they’re not alone and that there are options available. It’s important to educate yourself, work with your healthcare team, and never give up,” she added.
A report released by the World Health Organisation (WHO) last month revealed that more than 15 out of 100 people in Africa are suffering from infertility, highlighting an urgent need for increased access to affordable, high-quality fertility care.
Lifetime prevalence of infertility was found to be 17.8 per cent in high-income countries and 16.5 per cent in low- and middle-income countries, indicating that this is a major health challenge globally.
“In Kenya, primary infertility is estimated to be two percent of the 15 to 45-year-olds in unions. There, the secondary infertility is 42 percent. In Uganda and Tanzania, the primary infertility prevalence was three percent and secondary at 35 percent,” said the WHO report.
WHO Director-General Tedros Ghebreyesus emphasised the need for better access to fertility care.
“The proportion of people affected shows the need to widen access to fertility care and ensure this is no longer sidelined in health research and policy so that safe, effective, and affordable ways to attain parenthood are available for those in need,” said Dr Ghebreyesus.
Another woman who has been to hell and back in her quest to be a mother is 38-year-old Kamene*, a Nairobi resident.
Kamene was diagnosed with PCOS at the age of 23. It hit her hard.
“My PCOS diagnosis was a daunting moment in my life. I remember feeling a mix of fear, sadness, and confusion as I tried to process the news. But with time, I realised that obstacles in life are meant to be faced head-on, and I found the strength within myself to not only cope with my condition but also to embrace the journey ahead with resilience and hope,” Kamene told Healthy Nation.
The then 23-year-old would face numerous challenges as a result of her PCOS.
The condition – characterised by hormonal imbalances, irregular periods and the formation of small cysts on the ovaries – impacted her life both physically and emotionally.
Kamene struggled with irregular menstrual cycles, which caused her great discomfort and anxiety. The unpredictability of her periods led to many instances of embarrassment and inconvenience, making her feel isolated and misunderstood by those around her.
The hormonal imbalances associated with PCOS also led to weight gain and persistent acne, which affected Kamene’s self-esteem.
She tried various diets and medications, but nothing seemed to produce lasting results. This took a toll on her mental health as she felt like her body was betraying her. She began to question her self-worth.
“Living with PCOS was a roller-coaster of emotions. There were days I felt defeated but I knew I had to keep pushing forward and learn to adapt to my new reality,” Kamene said.
Despite these challenges, she was determined not to let PCOS define her. She sought out support groups and online forums, where she found solace in connecting with other women who were facing similar struggles. Through these connections, she gained valuable knowledge about managing her symptoms and living a healthy lifestyle.
“I remember feeling isolated at times; like no one understood what I was going through,” she said.
“But when I found online support groups and connected with other women facing similar challenges, it gave me hope and the strength to keep fighting,” she added.
Kamene also researched about PCOS and fertility treatments.
She consulted medical professionals and conducted extensive research on her own, arming herself with knowledge and strategies to increase her chances of conceiving.
Through the support groups she joined, Kamene found her soulmate in a man who had a cousin suffering from PCOS.
For Kamene, this man was the ideal partner as he already had a deep understanding of the challenges she faced. His empathy and insight allowed him to offer her the emotional support and care she needed, making their bond even stronger.
Together, they embarked on their journey as a married couple.
Over the next 10 years, Kamene and her husband consulted various fertility experts and tried several treatments to no avail.
As time went on, the emotional toll of their struggle began to weigh heavily on the couple. Societal expectations added to their burden, with whispers and unsolicited advice becoming all too common.
Never gave up on each other
“The journey was incredibly difficult but my husband’s unwavering support kept me going,” Kamene said. “We faced many obstacles but we never gave up on each other.”
Even Kamene’s in-laws suggested that their son considers remarrying to start a family. However, her husband remained steadfast in his love and commitment to her.
“For better or for worse,” he would often remind her, reassuring her that their bond was unbreakable.
In a surprising turn of events, Kamene discovered she was pregnant just as she had given up hope of ever becoming a mother.
“I couldn’t believe it when I found out I was pregnant. It felt like a miracle, and it reaffirmed my faith in God,” Kamene added.
A recent UN-backed study, published in the Human Reproduction Open journal, assessed the costs associated with infertility treatments in low- and middle-income countries.
The report raises concern over the affordability of fertility treatments, as direct medical costs for assisted reproductive technologies (ART) range from $2,109 to $18,592 (Sh286,824 to Sh2.5 million), making it difficult for patients in developing countries.
Last month, Dr Pascale Allotey, the WHO director for sexual and reproductive health and research, commented on the financial burden of infertility treatments: “Millions of people face catastrophic healthcare costs after seeking treatment for infertility, making this a major equity issue and all too often a medical poverty trap for those affected.”
Improved policies and public financing can significantly increase access to treatment and protect poorer households from falling into poverty, Dr Allotey added.
The WHO is advocating for ART regulatory frameworks in low- and middle-income countries and the integration of infertility treatment as an essential service under universal health coverage.
The researchers noted that the absence of ART policies and governments’ insufficient capacity or commitment to respond to infertility means that many couples pay for their treatment out of pocket, resulting in treatment inequalities.
Said Dr Ghebreyesus: “It is my hope that governments use this report to develop evidence-based policies and adopt proven solutions as part of their efforts to strengthen health systems to help people fulfil their fertility intentions and live healthier lives.”
Infertility, affecting a significant number of couples worldwide, can be an emotionally draining journey.
Dr Charles Muriuki, a consultant obstetrician, gynaecologist, and laparoscopic surgeon at MP Shah Hospital, shared insights into the causes of infertility, the importance of lifestyle changes, and available treatment options.
Dr Muriuki said infertility, as defined by the WHO, is characterised by a couple’s inability to conceive after regular unprotected intercourse.
“Common causes of infertility in women include fallopian tube blockage, dysfunction of the uterus or ovaries, and hormonal imbalances,” he said.
He emphasised the importance of lifestyle changes such as quitting smoking, avoiding excessive alcohol intake, and maintaining a healthy weight especially for women with PCOS.
Treatment options for infertility, he said, vary based on the cause and patient, with options ranging from hormonal treatment and surgery to assisted reproductive techniques.
Dr Muriuki emphasised the importance of visiting a gynaecologist to help map out a treatment plan.
“The emotional stress and anxiety associated with infertility should not be overlooked,” warned Dr Muriuki.
He advised that an infertility consultation should include a review of the psychosocial effects, noting that counselling and psychological support should be provided.
While genetic conditions can contribute to infertility, he said, they are not common and usually require genetic testing.
Couples with a history of infertility may be recommended to undergo genetic testing and seek advice from a geneticist about available treatment options, such as sperm or egg donation.
Fertility testing and treatment can be invasive, uncomfortable, or painful, and may require emotional and financial commitment.
Dr Muriuki stressed the importance of proper guidance and counselling, as well as a clear understanding of the available options.
When asked about the success rate of fertility treatments, Dr Muriuki said: “Three to five out of 10 women who undergo in vitro fertilisation go home with a live baby.”
The success rate depends on the woman’s age, her body mass index, the treatment protocol, the duration of infertility, among others.
Dr Muriuki also addressed common misconceptions about infertility, such as the belief that it is solely a woman’s problem.
“One out of three couples suffering from infertility have a male factor issue, and another one out of three have both a female and a male factor issue,” he said.
Additionally, he dispelled the myth that contraceptives cause infertility, explaining that fertility resumes immediately after stopping most contraceptives, with the exception of progesterone injections.
Regarding the perceived cost of seeing a fertility specialist, Dr Muriuki noted: “The initial consultation with a fertility specialist can help decide on a pragmatic and well-informed treatment plan.”
He added that seeing a specialist is not a commitment to starting treatment but can be a valuable conversation to address concerns.
Dr Muriuki encouraged couples struggling with infertility to seek professional help, make necessary lifestyle changes, and consider the available treatment options.
As advancements in technology continue to improve fertility treatments, those who yearn for parenthood have more reasons to be optimistic.
*Not her real name