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atients and physicians unite to send a message of hope

Clinical trials have saved countless lives in allowing for successful new treatments to reach the market and improve health outcomes. Moreover, trials have brought more effective and safer drugs to the public to further science and healthcare.

One remarkable example of trials saving lives is the story of cancer survivor Laurie Adami.

Diagnosed with stage IV non-Hodgkin lymphoma, Laurie’s prognosis was bleak, and her experience with several different chemotherapies even bleaker. After 12 years of unsuccessful treatments, Laurie was enrolled into a novel CAR-T immunotherapy trial. In this CAR-T trial, Laurie’s own white blood cells were taken out of her body and engineered to recognise antigens on the cancer and infused back in, targeting cancer cells using Laurie’s own white blood cells.

Remarkably, this clinical trial for innovative CAR-T therapy had eliminated all 3 kilos of cancerous lymphoma from Laurie’s body, and it had saved her life. Due to the positive experience Laurie had, she’s since devoted much of her life to raising awareness for lymphomas and for trial therapies like the CAR-T therapy she’d received.

Laurie’s treatment saved her and thousands of others lives, and eventually led to CAR-T reaching the market in 2018, providing lifesaving treatment to many more.

While Laurie’s story is of hope, other people found themselves seeking out therapies in clinical trials with little luck in getting into trials. Neucruit recently interviewed Nadia Sethi, an ALS patient advocate regarding her own views on clinical trials. Over the last two years, Nadia has passionately advocated to bring more patients to trials for ALS, following the loss of her husband to ALS. Nadia shared her frustrations, but also her hopes for the future of clinical trials.

Initially, Nadia found no-responses and dead-ends from neurologists when seeking ALS treatments. She then turned to the clinicaltrials.gov website in the US to “pull information” from trials that looked relevant, and she’d called and emailed these trials, desperate to get responses.

Eventually, she sought hospital research team staff and emailed them too, to broaden her chances of a response for a clinical trial accepting ALS patients. Despite calling study centres and contacting them through their websites, few responded, or Nadia found very restrictive inclusion criteria that caused the trial process to “move surprisingly slowly.”

Most alarmingly, in her research she found that a harrowing one or two patients are recruited per site, per month, according to ALS experts. This suggests a very small population of people who can get any benefit from treatment and with such slow and poor recruitment, the testing of novel therapies is delayed, delaying life-saving treatment for people such as Nadia’s husband.

Ultimately, Nadia’s interview is a stark reminder of the need to advocate for clinical trials, to make people aware of them and to encourage participation. Through trials better treatments would become available worldwide. Thankfully, Laurie’s story isn’t unique, as thousands of people benefit from trials, but Laurie’s story nonetheless highlights the positive outcomes and provides hope for thousands of people seeking novel treatments.

Doctors perspectives show a similarly positive view of clinical trials. Most doctors view trials as the cornerstone of treatment progression, not only for cancer therapies like in Laurie’s case, but beyond, for other conditions too. These doctors play a key role in helping to recruit patients they deem eligible for trials; through novel therapies, more targeted medication can increase a patient’s quality of life, which naturally is great for doctors to witness. Similarly, doctors point out the benefit of added support for patients when participating in trials. With rarer illnesses often having few support groups and little information, through participating in clinical trials, there is not only more frequent and precise medical care, but there is often access to other patients with the same conditions that can provide emotional support alongside finding novel treatments.

Besides the personal benefit to patients, the potential for worldwide health benefits is immense, and doctors really believe in clinical trials as a means of further progressing healthcare and working towards more targeted therapies to better treat a wider range of conditions.

As all drugs start through clinical trials, they clearly play a prominent role in finding novel treatments and providing better clinical outcomes. The role of trials is not to be underestimated, for both patients and doctors alike.

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