"I'm worried that this drug could be the end of dwarfism altogether, and that's what I'm worried about."
A new drug called vosoritide has been developed to treat children with dwarfism, which is the most common form of dwarfism.
The drug is already available in the US, and the National Health Service in the United Kingdom is considering a possible roll-out.
Although many see the drug as a helpful breakthrough, Simmonds has concerns that it could potentially cause dwarfism.
Is it about changing who we are? She says early on in the film that she is not a fan of that.
There is a genetic condition that stunts growth in arms and legs. She has won 14 World Championship gold medals.
If I wasn't a dwarf, I wouldn't have gone to the Paralympics and made a career as an athlete like that.
In order to explore their motives and experiences, parents and children in the UK and US use vosoritide. People with dwarfism oppose its roll-out.
After filming the documentary, she spoke to the sports channel about how she felt.
She said it was great that people had choice. If I had a child, I wouldn't choose the drug because I knew what it was like to have dwarfism.
The charity Restricted Growth Association UK defines achondroplasia as a rare genetic condition that causes poor bone growth, resulting in shortened limbs. The average height of someone with achondroplasia is around four feet.
Many children with achondroplasia live healthy lives, because they are born to average size parents. There are some medical problems associated with achondroplasia.
As set out by to Great Ormond Street Hospital, infants with achondroplasia often have a curve in the lower spine, that may require a brace and some also develop bow legs, which can be treated with surgery. RGUK lists some more rare associated problems as hearing impairment, breathing problems in young children, hydrocephalus, spinal stenosis, leading to compression of nerves to the limbs.
Children with open epiphyses have the potential to grow because Vosoritide is designed to improve their growth. Patients take a daily dose.
Some patients may experience a temporary decrease in blood pressure as a result of the drug.
Vostroide was approved for use in the US and the EU for children over the age of two.
A year of injections are reported to cost around $332,000 (£240,000).
Some parents of children with achondroplasia may want to use the drug even if their child has no health problems.
American couple Joe andLeah Smith are members of the dwarfism community.
The assumption is that dwarfism is a problem that needs to be fixed, says Joe in the film.
In order to get a better idea of why the drug is being tested, Simmonds met with Dr Melita Irving, who led the UK trials. He wants to know what the metrics of success are.
Growth is the main thing that we measure.
As per the European Medicines Agency, from a sample of 121 children aged 5-17, those who received vosoritide grew about 1.57cm more during the one year of treatment than those receiving a placebo. The results also suggested that the improvement in growth is maintained while using the drug. The recommendation is to use injections until the patient is unlikely to grow any further.
Irving suggests that the aim is to deal with health problems in the dwarfism community.
She tells Simmonds that the trialling of this drug is not to eradicate dwarfism.
One of the purposes of trialling this drug is to see if we can eradicate the medical problems associated with achondroplasia, rather than eradicate dwarfism.
In 2019, the Restricted Growth Association UK published a statement saying they would "support any medical advancements that reduce the health complications of people with achondroplasia, avoid surgery, remove chronic pain and allow people to live every aspect of their lives to the fullest."
If it is shown that increased height is the only benefit of vosoritide, they would not consider it an important outcome.
Some of the people involved in the trial are shown in the film.
Thalia is one of the children. She has grown six centimetres in a year, which is two centimetres more than the average for a child her age with dwarfism.
Her mother says that increased limb length allows her daughter to perform tasks like running or catching more easily. She talks about the health problems that Thalia had earlier in her life, including bowed legs, and sleep apnoea.
The Hida family enroll in the US trial of vosoritide and are strong advocates. The 12-year-old has been using the drug for three years.
He wants to be better, but he is satisfied with who he is.
One of the delicate questions the film explores is around the parents making decisions on behalf of their children when they are born to average height parents.
When they have been living as average height parents, they don't know what it is like to live with dwarfism.
She said that it was up to the legal guardians to make the calls.
It is important to show that dwarfism does not need to becured.
As a dwarfism community, we have a role to play when it comes to parents who are nervous and unsure about what their child's life is going to be like. We need to show people that it is not all doom and gloom.
She said that she has always been happy with her body. She has been involved in sport since she was young.
She said that she went to her first World Championships when she was 12 and the Beijing 2008 Olympics when she was 13 and the London 2012 Olympics when she was 17.
I was at my best. I never saw my body in a negative way because it was something that won me gold medals.
She understands that not everyone has had a happy experience.
One of the more challenging scenes in the film is when Simmonds chats to her team-mate Will, who also has achondroplasia.
He has spoken about the abuse he has received because of his dwarfism.
He admits that sometimes he wishes he was taller.
If you could swap to be a normal person, would you?
For me, it is 50%. When we are out at the Paralympics, collecting amazing experiences, you go and not for the world, but when you have to miss out on things, I have been campaigning for more recently.
It has been eye-opening to speak to people with different experiences.
I feel very lucky that I have not gone through that because of who I am.
The UK's National Institute for Health and Care Excellence is expected to approve Vosoritide.
On the NICE website, it says: "The scoping exercise will be rescheduled to take place at a later date in 2023."
When asked what she wanted people to take away from the film, she replied that society is different and that is amazing. Let's embrace that. We are all human beings and don't treat anyone differently.
All Rights Reserved © 2024
