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Strictly Pushing Limits
TV dancing star and MS ambassador, Trishna Bharadia talks about transforming trials, championing caregivers and managing expectations
Since receiving a diagnosis of relapsing remitting multiple sclerosis (MS) at the age of 28 nearly ten years ago, Trishna Bharadia has used her experiences to help others cope with the condition in as positive a way as possible. A tireless campaigner, she has often put aside her own challenging health issues to raise awareness and inspire others, including taking part in prime-time TV ballroom dancing competition, People’s Strictly for Comic Relief.
“One of my main symptoms is fatigue, so dance training on top of working full time with my condition was really tough, but the impact on awareness was amazing,” she says. “Disabilities and chronic illnesses aren’t talked about enough, so patients often don’t get the support they need. That’s why it’s so important to get the word out.”
Bharadia has worked particularly hard in the Asian community, where disability is often stigmatized and hidden away, leaving people feeling isolated and without adequate support. “People are reluctant to ask for information so they may not be aware of the options open to them, especially in terms of clinical trials. Also, caring is something done within the family in the Asian community, so the role of the carer is much more influential. This needs to be addressed in terms of health literacy and translating materials to give clear and simple information, as well as reaching out to the older generation, who find it especially difficult to speak up and ask for information.”
A key element of her work has been in the complexities of patient participation in clinical trials. “I’m a very risk-averse patient, which is compounded by the fact that I’ve failed on two drugs for MS. I became immune to one, which prevented me from taking other licensed drugs, then I developed another long-term conditionwhile taking another drug, which now has to be managed on top of my MS.”
When offered a chance to take part in a trial, Bharadia wasn’t willing to “take the risk”as there were no guarantees it would work and participation could limit her future options. “You have to consider the future and the risk of developing other conditions as well as the impact that taking part in a trial will have on future medication options. It’s not a simple decision and you have to consider all factors and educate yourself.”
For her, there needs to be greater emphasis on shared care. “If a patient takes part in a trial and something happens that they are worried about, they need to be able to go to their consultant/GP and get their questions answered. It shouldn’t be an isolated situation;it should involve all caregivers, so that patients can be autonomous and carers feel supported.”
The crucial role of carers cannot be underestimated, she says. “There needs to be engagement with carers to make them feel part of the process. The emotional and practical burden of participation needs to be taken into account in the overall trial design. If someone is a good candidate but they feel their care giver has to take time off work and they won’t be supported, it can stop them from participating. But these barriers can be easily remedied with support”.
Her advice to pharma is simple – manage expectations. “If you don’t, patients become disillusioned with the whole clinical trial system. There are no guarantees; one of the ways to manage expectations is to give clear and easily understandable information to the patient at the right time. Patients and carers need to be able to trust what they’re told.”
Boosting patient trust is essential, she says. “If pharma’s reputation improves,patients will have more confidence in what’s they’re told. Increasedcollaboration with healthcare providers and advocacy will give patients and carers more information and knowledge of what they’re getting involved in. We need people to realize that trials are an essential part of clinical research, they’re not a last resort when you’re out of options.”
Multi-award winning advocate for people with multiple sclerosis and chronic illness, Trishna Bharadia will be speaking at Patient-led Clinical Trials in 8-9th May, 2017. She can be reached at:
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