The elite athletes fighting for acceptance

Some women’s sporting dreams are being crushed by World Athletics’ rules on testosterone levels. These athletes are among them.

7/30/2021 11:56:00 PM

Some women’s sporting dreams are being crushed by World Athletics’ rules on testosterone levels. Here's how these women are battling for acceptance.

Some women’s sporting dreams are being crushed by World Athletics’ rules on testosterone levels. These athletes are among them.

As an ambitious, determined teenager, Annet Negesa urged her body to run faster, and her body, always loyal, obliged her.Even before the middle-distance runner had a coach, Negesa was qualifying for -- and winning -- major regional competitions. At 19, she would travel to Daegu in South Korea for the 2011 World Championships. After securing a top-three spot in the 800 meter and 1500 meter categories, in four international competitions, the Ugandan athlete qualified to represent her country at the 2012 London Olympics.

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The following year, the young woman from Iganga, a small village in eastern Uganda, wasnamed ‘Athlete of the Year’ by the Uganda Athletics Federationand seemed set for a life in the athletics spotlight.That did happen -- but not in the way she had hoped. Much has been written all over the world about Negesa. Not only because of her victories on the track, but also because of what happened to her off it.

'I felt my life is over': Negesa shares her harrowing storyIn August 2011, while at the World Championships, Negesa submitted to blood tests. According to the International Association of Athletics Federations (IAAF, now known as World Athletics) this was a requirement for all athletes competing that year. headtopics.com

But Negesa says she never received her test results, and without them, life continued as normal: With intense training for the London Games.It was while in Europe, just weeks before the competition, that Negesa would get a call from her manager, informing her that she could no longer compete at the Olympics.

She says he explained that the blood samples revealed levels of the hormone, testosterone, in her blood that IAAF considered too high and that at the recommendation of the athletics governing body, she would need to get further tests.Negesa’s bright future quickly darkened from that point. She headed to a specialist hospital in the south of France, the name of which was provided by the IAAF. There, she underwent a medical assessment that involved a further blood test and an MRI scan.

Again, Negesa says she didn’t understand what was happening, nor was she given any paperwork. “No one gave me advice ... like: ‘If you do this, you’ll get this later.’ No one explained to me what the consequences are.”World Athletics disputes this, saying in an email that “Ms. Negesa and her team were provided with the results of the tests undertaken.” The organization also adds that it subsequently advised Negesa by email “that it was important that a medical doctor in Uganda follows up with her, and explains to her what the different therapeutic options are.”

“They treated me like a guinea pig”Annet NegesaIn November 2012, after being taken to the Women’s Hospital International and Fertility Centre in Kampala, Uganda, the then 20-year-old woke up from surgery to learn her internal testes had been removed.“I woke up finding myself having cuts under my belly and really, I was asking myself, ‘What happened to me? What they did to me?’” headtopics.com

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Negesa says she had understood that she was being treated for hyperandrogenism -- the naturally high levels of testosterone her body produced -- but the surgery was not what she’d consented to. She says: “They gave me a suggestion of going for simple surgery or using an injection [to remove] the excessive testosterone in the body. My suggestion was using the injection.”

A medical report, seen by CNN, states that the doctors in Uganda “restrained from starting her on estrogen therapy,” claiming that they were “awaiting further discussions” with an IAAF doctor.Estrogen was essential for Negesa’s recovery. Retired endocrinologist Peter Sonksen has not treated Negesa but noted the importance of estrogen in treating patients like her, saying: “Once the testes are removed, as in this case, the blood testosterone and estrogen levels fall to zero and the athlete is even more hormone deficient than a post-menopausal woman.” Sonksen adds: “It is essential therefore to give estrogen 'replacement' therapy. In [its] absence, [the athlete] will suffer multiple issues affecting most body systems.”

World Athletics told CNN it "had no involvement in Ms. Negesa’s treatment" and that CNN would "have to ask [the doctor in Kampala] to explain the reference in this letter."In pain, and without the after-care that she needed, Negesa’s body could not perform as it once did. In an account of her story

published by Human Rights Watch, Negesa shared that she lost her university scholarship, and then her manager dropped her.Also facing public scrutiny for her sex, Negesa soon fell into depression, explaining that in Uganda, it was “very hard for a person like me… an intersex person.” In 2019, she was granted asylum by the German government. headtopics.com

What does it mean to be intersex?Intersex people have natural variations in reproductive anatomy, chromosome patterns or other traits that may not align with typical binary definitions of female or male. These variations are sometimes called differences in sex development, or DSD.

It is difficult to estimate how many people have DSD traits -- many live their entire lives without ever knowing they have one. Scientists estimate as many asone out of every 50 peopleis born with DSD traits.An intersex person may have any gender identity -- and may be cisgender or transgender -- depending on the sex they were assigned at birth.

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Modern medicine views sex as a spectrum with many variables.Intersex_Iconography_green_375px-ALLIntersex_Iconography_green_930px-ALLChromosomes and genesThose with XX chromosomes are typically assigned female at birth. Those with XY chromosomes are typically assigned male. But people are also born with variations like XXY and X0. Genes linked to sex development can also influence things such as hormone production.

HormonesThere are several different hormones that are naturally produced at a range of levels in people of all genders and sexes. Sensitivity to hormones can also affect the development of anatomy and may cause anatomical variations that are not associated with typical binary categories of male or female. There is debate in the scientific community as to whether androgenic hormones like testosterone are useful markers of athletic advantage.

AnatomySome people assigned female at birth are born with internal testes; some people assigned male at birth have a uterus. Though many people are assigned a sex at birth based on external anatomy alone, there are many naturally occurring variations in both internal and external anatomy.

Secondary sex characteristicsSome DSD traits only become apparent at puberty, when secondary sex characteristics, such as facial hair, breast tissue or distinct body shapes start to develop. Some traits are only discovered when trying to start a family or through specialized testing that most people never undergo.

At a track in Berlin, in the shadow of the 1936 Olympic stadium, Negesa is still visibly stung by her experience. She tells CNN about feeling confused at the discovery that her body was different from what she understood it to be, and feeling powerless and completely unsupported as her life unraveled. “I was still a teenager, had no choice because I had a love of the sport ... and they knew all the consequences which would come out from them.”

Referring to the IAAF, she adds: “They violated my rights as a human being. They treated me like a guinea pig.”The hospital declined to comment, citing confidentiality. In an email to CNN, World Athletics says: “The IAAF hyperandrogenism regulations state that the treatment must be prescribed by a physician who is independent from the IAAF, and that the IAAF is in no way involved in the process. Under no circumstances may the athlete be forced to undergo any specific treatment.”

A career derailedIn 2013, as Negesa struggled to come to terms with what had happened to her, in neighboring Kenya, Maximila (Max) Imali was learning that athletic success could lift her and her family out of a life of poverty.She remembers her high school coach encouraged her to train for the 800m race, rather than the sprints, telling her: “You see that you can make your family be on another level of living.”

“I just wanted to run good so that I can feed them,” Imali says of her family: Her mother, two siblings, and two orphans she also provides care for. “I was so motivated.”In July 2014, Imali got a chance to compete at the World Junior Championships in Oregon. “It was my first time to go to such a big race,” she recalls. “And after that, I realized that I can do good.”

She excelled in the heats but fell in the finals of the 800m event.“After I came back home, [I] sat and discussed with the coach how I can improve and what is the best thing for me to do, so that I can do good in 800m and 1500m,” she says.But Imali didn’t get that chance. The young woman, who was quickly gaining national and international recognition, also got caught in the crosshairs of IAAF regulations.

Once in Kenya, Imali says she received a call from an official with Athletics Kenya, telling her: "Maximila, they want you to be tested from the IAAF.”“God wanted me to be the way I am”Maximila ImaliSo, Imali took a matatu minibus from Eldoret to a hospital in an upscale Nairobi neighborhood for a blood test and a physical examination.

Consistent with Negesa’s account, Imali says she was given little information about the procedures or their consequences. Referring to the hospital’s physicians, she says: “They did not tell me anything concerning my body. After we did every examination, they were just putting the results in the envelope. Then they take that envelope to Athletics Kenya."

It would be several months before Imali would learn from her manager, over a phone call, that she would not be allowed to compete in the 800m category.She says she was told: “Max, you cannot run because you have high testosterone in your blood.” He went on to list all the races she could not compete in and shared a letter from IAAF explaining the regulations.

Weighed down by the questions about her gender identity that the assessments had thrown up, Imali went to speak to her mother. What she heard reassured her. “For me, I've been raising you like a girl from the start when you were born, and that is it. I know you are a girl,” she recalls her mother saying.

But Imali says that being rejected for how God made her, as well as the questions about her sporting, future all took a toll on her mother’s health, and in September 2016, Eunice Khaleha died.“My mom was hospitalized because of me, because of the pressure,” Imali says, her voice filled with sorrow and regret. “She died because of me. It still affects me because I always feel that I'm the cause of her death.”

‘Pull up your shirt, and push down your pants’Many sporting events, from track and field to gymnastics, swimming to basketball, are divided according to a binary separation of genders. Modern medical consensus notwithstanding, as far as much of the sports world is concerned, there are only two recognized categories: Men and women.

However, Negesa and Imali both have -- or had -- levels of testosterone that their sports’ governing body officials deemed too high for some of the women’s competitions.World Athletics now has a set of rules for athletes with what it calls differences of sex development (DSD), requiring them to lower the naturally occurring levels of testosterone in their blood to

liter of blood (5 nmol/L) through medication or surgery if they want to compete in certain races.What are World Athletics’ rules on testosterone?In 2019, World Athletics banned some athletes from competing in international women’s middle-distance races unless they used medical interventions to lower the testosterone that occurred naturally in their bodies. The restriction targets athletes who compete in women's events and have certain differences of sex development (DSD).

Read more: CNN »

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