Medical Hero Spotlight: Marc Yale, Mucous Membrane Pemphigoid Advocate

marc yale
Pemphigoid Diagnosis

In 2007, Marc Yale visited his optometrist for a case of what he thought was conjunctivitis (pink eye). After running some tests, his doctor could not determine the cause of his symptoms. Within days, Marc broke out in blisters across his skin, mouth, nasal cavity, and throat. The blisters, especially those in his mouth and throat began causing other problems, including jaw clenching and difficulty swallowing. “In the beginning, I didn’t realize my eye symptoms and the blisters had any relation,” Marc recalls. “I visited the dentist who thought the jaw clenching was from impacted wisdom teeth. I went ahead and had those teeth removed, but then the hole wouldn’t heal and began to blister.”

After several months of pain and discomfort and multiple visits with specialists, Marc saw his General Physician, desperate for answers. “At this point, the blisters were so painful I couldn’t shower, I had lost 40 pounds from struggling to eat, and was losing vision in one of my eyes as it began to swell and close,” Marc shares.

Marc’s doctor referred him to a dermatologist who referenced a medical textbook, believing Marc may have an autoimmune condition he had never seen in real life. One biopsy later, the dermatologist’s suspicion was confirmed, and Marc was finally diagnosed with a chronic condition, Mucous Membrane Pemphigoid.

“Finally receiving a diagnosis was such a relief,” Marc remembers. “I’ve learned since then, that this process of delayed diagnosis is common with rare diseases. Most individuals with Pemphigoid see 5-10 doctors before learning what condition they have and their treatment options.”

Treatment for Pemphigoid: Pandora’s Box

Although Marc was excited to finally have answers for his painful symptoms, reviewing treatment options for this condition opened a “Pandora’s Box” of new challenges. The mainstay therapy for Pemphigoid is corticosteroids given in very high dosages, which can cause many side effects. Other popular treatments include immunosuppressant medications, which can help suppress the autoimmune condition, but come at the risk of making patients vulnerable to secondary infections. Marc’s doctors recommended he begin treatment using a “stairstep approach”; trying the drugs that work the fastest in hopes that they would be effective. In Marc’s case this meant beginning a combination of corticosteroids combined with the immunosuppressant medication.

Although these treatment options may be the fastest, they still take 6-8 weeks to work. “While I waited to see if this treatment plan would be effective, my condition began to progress,” Marc notes. “My blisters caused constant bleeding, making tasks like sleeping and getting dressed challenging. The blisters in my mouth and throat felt like I was swallowing razor blades all day long. Eventually, my drooping eye fused close and I lost my vision permanently. I couldn’t see, so I couldn’t work or drive.”

Finding a Clinical Trial

During this time, Marc began to research if there was anything new available for patients beyond his current treatment plan. While there were very few clinical trials being held for Pemphigoid 15 years ago, there was one drug trial Marc found in France. “I knew getting into a trial was my best chance of remission and figured I would be a great candidate. My wife and I were ready to move to France for this opportunity,” Marc shares.

Unfortunately, Marc was not eligible for the trial and had to continue with standard care until another option was found. Eventually, when his doctors had exhausted their resources, Marc was sent to see eye and dermatologist specialists in Boston, who suggested he go on therapy for a trial happening for an off-label drug, not yet approved by the FDA. Marc was able to find a doctor who would prescribe this drug to him at home and began the new therapy. In the meantime, he continued his research online to find a community of other people experiencing this disease.

Barriers to Accessing Clinical Trials

In Marc’s case, as with many other patients, one major barrier for treatment and clinical trial access is a delay in diagnosis. “Our healthcare system is set up in a way that makes it difficult for patients to access the specialists who can diagnosis them with these conditions. Additionally, this is not a common condition, so many doctors have never seen it and can’t readily diagnose it,” Marc notes.

Another barrier for the Pemphigus and Pemphigoid community is the lack of standardized guidelines regarding treatment for this disease in the US. Treatment is up to the individual doctor and can vary greatly. Marc advocates for consensus guidelines for all patients and doctors to follow. Patients also must consider the financial burden of treatment, as the price for these medications is astronomically high.

“Anyone with a rare or debilitating disease will feel a loss of control in their life. Treatment should be made simpler and more available for patients,” Marc explains.
Patient Advocacy with the International Pemphigus and Pemphigoid Foundation

After looking around online, Marc found the International Pemphigus and Pemphigoid Foundation (IPPF), a site dedicated to spreading awareness and sharing resources for patients. After reaching out, the organization asked Marc to join and offered volunteer and advocacy work. Marc took on an outreach project to find doctors who specialized in these conditions across the country, as the site currently only had 30 doctors listed. Marc also helped form a peer health coach program, where patients were available to help other patients with managing the disease. These peer health coaches could help navigate newly diagnosed individuals through challenges, such as finding the right doctors, choosing a treatment, possible symptoms, and how to get involved in clinical research.

“I was happy to volunteer at IPPF because I found it rewarding to help others so they wouldn’t have to go through the diagnosis and treatment process alone like I did. I found mentoring very cathartic and used it as a coping mechanism to manage my own disease. During this time, I became passionate about advocating for the Pemphigus and Pemphigoid community,” Marc shares.

Although Marc was working part time as a volunteer at IPPF to start, after two years his condition went into remission and he was able to dedicate his time fully as a coach, and later as the Executive Director of IPPF from 2016-2020. Marc spent his time as a director building educational resources for medical professionals, students, and policymakers in Washington, DC. After he experienced a flare up, Marc made the decision to step down from his role and work on a volunteer-basis again, this time focusing on advocacy for the foundation.

Marc remains a coach in the peer health coach program today, staying in contact with others he has coached or met through his advocacy work. “It’s the best and worst part of my job. I love having the opportunity to build those relationships and help others, but it’s hard because I know what these people are going through. This is a truly devastating disease,” Marc reflects.

 

Marc’s advocacy has not only impacted the lives of others in his community but also his own. “Even with a support system, only someone who has your disease really knows what you’re going through which is why patient networks are so important.”

“I’m a serial advocate,” Marc jokes, “I can’t stop advocating because it’s part of who I am; it’s what I’m passionate about. The more people know about this disease, the more resources will become available.”

Today, with the help of Marc and many other volunteers, IPPF has increased their list of specialty doctors from 30 to 400, opened sister organizations internationally, and increased awareness and funding for the disease. Currently, there are 10 Pemphigus clinical trials running and 4 for Pemphigoid, a major jump from the single trial Marc found available decades ago.

Marc’s advice to patient advocates just starting out is to “Never take no for an answer. Be committed, persistent, and keep trying. Whether you’re a small organization, a newly diagnosed patient, or an advocate, you’re never alone. There are so many others out there wanting to make a change or difference just like you.”

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Sources: https://www.pemphigus.org/

 

Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org

Voices From Within: Patient Data Collection 101 Flash Webinar

3 Part Flash Webinar Series

There are a variety of ways in which patient data can be collected in clinical research. As such, it’s critical to keep patients informed on these methods as they progress through trials.

Join Curebase’s Vice President of Clinical Trial Innovation, Jane Myles and Director of Data Management, Kim Andreasen, for Episode One of our Voices from Within: Humanizing Clinical Research Data series and gain a comprehensive overview of how patient data is collected in clinical trials.

View the webinar below.

Save The Date For Our Next Webinar Episodes

Episode 2: “Conversations on Clinical Trials – Part 2”
Wednesday, September 21 | 12 – 12:15pm

Episode 3 “Conversations on Clinical Trials – Part 3”
Wednesday, November 2 | 12 – 12:15pm

Panelists:

Jane Myles

VP, Clinical Trial Innovation at Curebase

Kim Andreasen

Director, Data Management at Curebase

Addressing Barriers to Clinical Trial Enrollment

Clinical trials offer patients with difficult-to-treat forms of cancer a chance to receive the most up-to-date and promising care available with the prospects of improved health outcomes and the benefit of advancing medical research. Most patients express a willingness to participate in clinical research, yet only a small fraction ultimately end up enrolling in a trial due to barriers that make participation difficult or even impossible. Consequently, approximately 20% of cancer clinical trials fail due to insufficient patient enrollment.

Barriers to treatment
One of the most common barriers to trial participation is location. Most cancer trials are concentrated at large academic centers that have the resources to dedicate to research, yet most cancer patients receive their care at small, local oncology practices. According to a 2018 American Cancer Society Cancer Action Network (ACS CAN) report, Barriers to Patient Enrollment in Therapeutic Clinical Trials for Cancer, only about 1 in 4 patients has access to clinical trials where they are being treated. Yet, if asked to enroll in an available trial, more than half of eligible patients typically agree to do so.

Another barrier is cost. While private health insurance as well as Medicaid and Medicare are required to cover the routine medical costs of trial participation, there is no such coverage for other non-medical out-of-pocket expenses patients may incur.

Trial participants are often required to see their doctors more frequently, which can mean more money spent on things like gas, parking, food, and lodging. Those costs add up, especially for low-income patients. Research has shown financial burdens can lead to a nearly 30% lower trial participation rate among individuals with annual family income of less than $50,000.

Cancer care inequity
Unfortunately, these barriers and others often contribute to long-standing inequities in cancer clinical trials. Despite having an increased burden of disease, racial and ethnic minority groups, older adults, rural residents, and those with lower socioeconomic status are consistently underrepresented in cancer clinical trials.

This underrepresentation hampers research and, without deliberate efforts to rectify these disparities, research may miss why cancer outcomes are often worse for patients with limited access to care, lower incomes, and other factors.

No one should be disadvantaged in their fight against cancer because of how much money they make, the color of their skin, their sexual orientation, their gender identity, their disability status, or where they live.

ACS CAN has prioritized health equity to ensure that cancer patients are provided with equitable care based on social determinants of health. This is why ACS CAN is working hard to remove these barriers and ensure every patient has equitable access to clinical trials.

Reducing disparities
In 2018, ACS CAN began analyzing common barriers to patient enrollment and provided stakeholders in the research ecosystem with over 20 recommendations that should be taken to make trial enrollment easier for patients. Earlier this year, ACS CAN issued another report targeted specifically at reducing disparities in clinical trials.

Right now, ACS CAN is working to help pass the bipartisan DIVERSE Trials Act through both chambers of Congress. The legislation would help address health equity and disparities by allowing clinical trial sponsors to reimburse patients for non-medical costs associated with their trial participation — such as travel, parking, food, or lodging — and would allow trial sponsors to provide patients with the technology necessary to facilitate remote participation in clinical trials.

The goal of cancer research is to generate new knowledge that can be used to improve survival rates and quality of life for all patients with cancer. But to achieve that goal, it’s crucial that clinical trials reflect the broad diversity of cancer patients they’re hoping to treat. ACS CAN is dedicated to working with patients, survivors, and their loved ones to ensure that happens and to make cancer clinical trials accessible and available to all interested patients. Together, we can improve access and address healthcare disparities for a world with less cancer.

Lisa A. Lacasse, M.B.A., President, American Cancer Society Cancer Action Network (ACS CAN)

The Extraordinary Gift of Clinical Trial Participation

Medical heroes can be found everywhere. They are mothers and fathers, siblings, children, friends, colleagues, and everyday people who have chosen to give the extraordinary gift of participation in clinical research.

Their decision to participate is an altruistic gift that always carries risk, usually offers no direct personal benefit, yet contributes profoundly to collective knowledge about the nature of disease, its progression, and how to better treat it. Ultimately, future generations are the direct recipients of this gift.

Most people know very little about clinical trials until they face the sudden and often unexpected prospect of a serious and debilitating illness for which no medication is available or adequate. Typically, patients, their families, their friends, and their healthcare providers must gather information quickly to make decisions about whether to participate. This rush to navigate the unfamiliar terrain of clinical trials invariably feels overwhelming and confusing.

Appreciating medical heroes
In 2004, the Center for Information and Study on Clinical Research Participation (CISCRP) was founded to provide outreach and education to those individuals and their support network considering participation in clinical trials. Based in the Boston area, this nonprofit organization focuses its energy and resources on raising general awareness, on educating patients and the public, and on enhancing study volunteer experiences during and after clinical trial participation.

Our many events and services are designed to improve public and patient literacy, to engender feelings of empowerment and control, to ensure more informed decision-making, and to recognize and appreciate medical heroes.

This special supplement also plays an important part in raising awareness and literacy. It is a reference resource
offering an introduction to clinical trials and thanking the millions of people and the clinical research professional community who, together, help advance medical knowledge.

At the present time, nearly 4,000 experimental drugs and therapies are in active clinical trials, and that number continues to grow as improvements are made in detecting disease, in discovering new medical innovations, and in understanding and addressing the root cause of acute and chronic illnesses.

 
At the very heart of all this promising clinical trial activity are medical heroes to whom we owe our deepest appreciation for their profound
gift of participation.

Written by: Ken Getz | Founder and Chairman, CISCRP

Article from 2022 Clinical Trials Supplement, USA Today. View Supplement Here >

Clinical Trial Care and Compensation

From "The Gift of Participation" by Ken Getz, Founder & Board Chair, CISCRP

Payment for participation is considered compensation for your time and commitment to comply with the protocol. Healthy volunteers in phase I studies of a new treatment or device are usually paid for their participation. Study volunteers in phase IV studies of drugs already on the market often receive compensation. And payments in clinical trials are often given to study volunteers when the health benefits of an experimental treatment or new device are not known or are remote.

The compensation amount varies widely and depends on many factors including the length of the clinical trial, the number of visits that you’ll need to make during the study and the number and types of procedures that will be performed. Compensation can range from a hundred dollars to several thousand dollars. Partial payments are made over the course of participation. The amount and schedule of payments is proposed by the sponsor of the clinical trial to the IRB overseeing the study. The IRB will review, and in some cases revise, the proposal to ensure that it does not coerce or influence someone to agree to participate. Patient recruitment advertisements usually list compensation amounts. The informed consent document lists compensation amounts and payment schedules. You can also ask whether a trial is offering compensation and the amount when calling a research center to inquire about participation.

Once participation begins, the research center typically writes each volunteer a check as the study progresses—usually on a per-visit basis. A small bonus may also be paid to volunteers who complete the entire study. In some cases, study doctors may dispense approved medication samples and provide additional care free of charge after the trial to show their appreciation to study volunteers.
Any financial compensation paid to study participants is considered taxable income by the Internal Revenue Service (IRS). However, research centers are obliged to report to the IRS only payments to individuals that total $600 or more for the year. These Form 1099s for “Miscellaneous Income” are generally sent out to participants in January, the same month employers are shipping out W-2 forms to their employees.

If a volunteer decides to withdraw from the study before completing the trial, the research center will usually provide partial compensation.

For more information on clinical trials and making informed decisions about volunteering for clinical research, read “The Gift of Participation” by Ken Getz, Founder and Board Chair, CISCRP.

You can find the book here.

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Improving Representation in Breast Cancer Clinical Trials & Developing Better Medicines for All

Article from CISCRP's Patient Diversity Campaign

Article from our 2021 May Patient Diversity Campaign

The devastating impact of the COVID-19 pandemic, particularly on communities of color, has been a painful reminder of the racial and ethnic disparities that have long existed in our country. In the United States, Black people tend to have higher rates of chronic and progressive conditions, such as high blood pressure, diabetes, and cancer and face greater obstacles when it comes to prevention, detection, and treatment. This is especially true in the breast cancer space. 

  • Black women are often diagnosed at later stages and can often have a worse prognosis [1];
  • Black women face a 20% to 40% higher mortality rate despite overall rates of breast cancer in Black and white women being about the same [2];
  • Black women have a 39% recurrence rate and a 52% higher relative risk of death compared to white women [3]; and
  • Historically, Black women have been under-represented as participants in breast cancer clinical research [4].
 
Through allyship with community partners and leaders in communities of color, Pfizer is focused on continuing to improve diverse representation in breast cancer clinical trials.

Most recently, Pfizer partnered with the Tigerlily Foundation to launch Health Equity, Advocacy and Leadership (HEAL) sessions to advance education around clinical trials for Black women with cancer. The program focused on:

  • Shedding light on the breast cancer journey for women of color.
  • Improving access to breast cancer clinical trials for women of color.
  • Building trust and enhancing the relationship between breast cancer patients and their care partners.
  • Educating women of color on clinical trials and strengthening their capacity to increase awareness and participation in breast cancer clinical trials. 
  • Identifying barriers and determining solutions that can improve access to breast cancer clinical trials, with the hope of sharing these learnings in other treatment areas.

“Race, literacy, financial barriers, access, social, systemic and hereditary backgrounds should not be determinants of life and health equity,” said Maimah Karmo, President, Tigerlily Foundation.

“There are significant opportunities to strengthen engagement among the Black community, healthcare providers, and medical organizations, toward improving health and health outcomes. In order to bring about change, we have banded together with colleagues and friends to advocate for increased access and awareness of breast cancer research for women of color.”

“We are excited to transform systems globally – with one vision – to champion Black breast cancer as a social justice issue and eradicate as many barriers as possible that lead to loss of life for Black women.” 

Race, ethnicity, age, and sex can all impact how different people respond to the same medicine or vaccine. This is why diversity among clinical trial participants is so important. The more diverse a group of clinical trial participants, the more we can learn about safety and efficacy of a potential medicine or vaccine for people who have characteristics like those of the participants. Participation is entirely voluntary and for those in a position to give it, it is a gift.

As a leading global pharmaceutical company, Pfizer is committed to working with Tigerlily Foundation and communities of color to help reduce health disparities. The HEAL sessions provided an inspiring forum that reinforced old and uncovered new commonalities, obstacles, unique experiences of Black patients, and the gaps in access to clinical trials as an option to consider. Each session allowed Pfizer and patient advocates from the Tigerlily Foundation to have open and honest dialogues on the disparities for Black women living with breast cancer, and un-cover potential solutions and tools for patients, caregivers, healthcare professionals, and clinical site staff. 

Carmen White, Pfizer Director, Multicultural Participant Experience said, “I’m so thrilled that the Tigerlily patient advocates, also known as ANGEL Advocates, are among our partners to improve the overall trial experience for future patients. I left each HEAL session moved and motivated.”

Equity is one of Pfizer’s four core values. From medical grants aimed at actively reducing the disparities in care, to resources for patients, caregivers, and healthcare professionals to navigate their unique cancer journeys and treatment decisions, Pfizer has made it a priority to be inclusive, act with integrity, and ensure every person is seen, heard, and cared for. 

Representation matters in clinical research because it ensures that medicines and vaccines in development benefit all.

The HEAL project demonstrates one way Pfizer is doing its part in ensuring women of color are represented in clinical trials. To learn more about joining a clinical trial, please visit pfizerclinicaltrials.com/learnmore. With your help, breakthroughs for all are possible.

References
1. ACS, American Cancer Society (2016) Breast can-
Society, Atlanta
2. Breast Cancer Screening in Women at High-er-Than-Average Risk: Recommendations From the ACR. Monticciolo, Debra L. et al. Journal of the Ameri-can College of Radiology, Volume 15, Issue 3, 408 – 414
3. Black Women Have Higher Risk of Recurrence Than Other Ethnicities, Oncology Times: January 5, 2019 – Volume 41 – Issue 1 – p 24 doi: 10.1097/01. COT.0000552839.22529.72
4. Bonner D, Cragun D, Reynolds M, Vadaparampil ST, Pal T. Recruitment of a Population-Based Sample of Young Black Women with Breast Cancer through a State Cancer Registry. Breast J. 2016 Mar-Apr;22(2):166-72. doi: 10.1111/tbj.12545. Epub 2015 Dec 14. PMID: 26661631; PMCID: PMC4775403. Accessed April 15, 2022

The Latest Dose: Debunking the Myths of Clinical Trials; Leveraging the Realities

Play Podcast Here:

Ken Getz, Executive Director and Professor of Tufts Center for the Study of Drug Development (CSDD), and Elisa Cascade, Chief Product Officer of Science 37, join The Latest Dose to debunk the myths of clinical trials. It is not always easy to tell the difference between misinformation and fact. Trusting false stories can lead someone to make decisions that may be harmful or costly. Ken and Elisa offer insights on the realities and complexities encountered in conducting clinical research around the world.

Visit The Latest Dose Website Here.

Community Advisory Board Helps Biogen Promote Diversity in Clinical Research

Article from our 2021 May Patient Diversity Campaign

Fifteen years ago, at the age of 42, Israel Robledo was diagnosed with Parkinson’s disease. Shocked, he spent the next nine months coming to terms with his diagnosis. “I was married. I had three girls at home. I was working as a schoolteacher. And I was thinking, ‘Oh my gosh, my life is over,’” he says. “I only knew about older people having Parkinson’s.”

But, after that first nine months, Robledo realized that being a victim didn’t suit him. So, he decided to be proactive and became a patient advocate for those with Parkinson’s disease, working to ensure transparency and diversity in clinical research. Robledo, who is Hispanic, is one of 18 members from underrepresented communities offering their experience to biotechnology company Biogen.

Community Feedback

The Community Advisory Board (CAB) was established to serve as a bridge between Biogen team members and communities that have encountered a lack of education, awareness and access to clinical trials. This includes those who identify as Black or African American and Hispanic and/or Latino, and it has recently expanded to include Native Americans, Indigenous People, Asian Americans and Pacific Islanders. Further compounding these issues is the distrust of clinical trials due to historical events and injustices.

“Let’s face it, pharmaceutical companies don’t have the best reputation,” Robledo observes. “But Biogen is building trust. They realize people of different races and ethnicities react differently to medical issues and to clinical trials.”

The Board was set up in partnership with the Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit dedicated to educating patients and the public on clinical research participation.

The CAB’s role is two-fold: Help inform Biogen team members on issues regarding race, ethnicity, associated health disparities and awareness initiatives, as well as help Biogen to better communicate with underrepresented communities on points of concern and barriers to accessing clinical trials.
“In forming a Community Advisory Board that is really diverse in membership – representing not just different races and communities, but also individuals who identify with living with conditions and disease areas that Biogen researches – we have the opportunity to listen and learn,” explains Kate Wilson, Biogen’s Head of Health Equity in the Patient Engagement, Equity and Transparency team.

Clear Messaging
Through ongoing conversations on messaging, tone and images, Biogen and CAB members have worked together to create honest and transparent communications geared toward underrepresented communities, their healthcare practitioners and their caregivers. “CAB members were co developers of these materials,” notes
Wilson. “They had seats at the table, and had direct input and feedback. That is how we built our messaging.”

CAB members have provided hundreds of points of feedback on sharing information to patients, ranging from trial descriptions to logistics (such as whether a patient is reimbursed for their travel expenses or paid for their time) to whether a person needs to reveal their immigration status – a real concern for many people and something that Biogen now addresses in its assets. “In all of our materials, we make sure that patients know that information about immigration status will not be collected in any Biogen clinical trial,” says Wilson.

Robledo credits the company for its approach of making direct, immediate changes to communication
materials based on CAB members’ input. “I’ve been a patient advocate with many pharmaceutical
companies, but none have been like Biogen,” he says.

 

“When other companies ask for patient input, they say, ‘This is what we’ve done. Tell us if you like it or not.’ But Biogen says, ‘Tell us what we need to change so that it
impacts the patient community the way it needs to.’”

 

The final products are, as Robledo says, “pretty darn good. I take pride in saying these materials are something that we came up with. Providing a voice is why I became a patient advocate.”

Looking to the Future
The CAB and Biogen’s work towards building diversity, equity and inclusion into its clinical research is garnering industry attention, winning the 2021 Global Pharma Patient Champion Award. And Biogen’s recent addition of voices from other underrepresented communities points toward its continued efforts to better understand the
needs and challenges among various populations. The end goal: to better develop potential medicines that are safe and effective for all.

“It’s our way of ensuring that a diverse voice is heard and built into our clinical development and the way we approach drug development,” Wilson says.

 

“When we look at the work ahead of us to really improve representation in our clinical trials, it’s so critical that we’re involving the diverse communities and voices in that process.”

Medical Hero Spotlight: Trishna Bharadia, Advocate for MS & Other Chronic Conditions

Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org

Living With Multiple Chronic Conditions
“As someone with long term chronic conditions, I believe that it’s in our interest to make the healthcare system, including the drug development cycle as patient focused as possible,” says Trishna Bharadia, advocate for Multiple Sclerosis and many other conditions. “At the end of the day, nearly everyone will be a patient or care partner at some point in their lives. We should be working to make the system more patient-focused.”

Trishna works as a Spanish-English translator for a business intelligence company in the UK, but her self-employed work, including her advocacy initiatives and patient engagement consulting are what she is most passionate about. Trishna lives with several chronic conditions, including Multiple Sclerosis, Obsessive Compulsive Disorder, Irritable Bowel Syndrome, Urticaria, and Angioedema.

Multiple Sclerosis (MS) Diagnosis

Trishna was diagnosed with MS in 2008 at 28 years old. She began showing symptoms three years prior to this diagnosis, beginning with the loss of strength in her hands, and progressing to the loss of feeling on one side of her body. These symptoms triggered Trishna’s journey into the MS diagnostic pathway. She was first referred to a neurologist and underwent testing before receiving her diagnosis of relapsing MS.

“An important fact to keep in mind about MS treatment is that no people experience the disease in the same way,” Trishna explains. Different patients may have different combinations of symptoms and the progression of the disease can also vary. A prime example of this occurrence can be seen within Trishna’s own family. Diagnosed in 2011, Trishna’s twin sister also lives with MS but experiences some different symptoms and has opted for different treatment options.

In Trishna’s case, the standard treatment for her relapsing MS differs from progressive MS. “With my MS, disease modifying therapies are the most common form of treatment. I have been on two of these therapies but unfortunately had issues both times. With the first medication I was on, I developed neutralizing antibodies and became immune to the treatment. The second time, I had adverse side effects including the urticaria and angioedema which then became chronic conditions,” she recalls.

Obsessive Compulsive Disorder (OCD) & Irritable Bowel Syndrome (IBS)

Trishna’s other conditions were not diagnosed until several years after her MS diagnosis. “I lived with symptoms of OCD throughout my childhood and adult life but was not diagnosed until my early 30s,” she explains. “My journey with IBS began around that time as well. Although I had been experiencing some symptoms since a bout of food poisoning many years ago, it was in 2018 that I had a flare-up while travelling abroad for advocacy work and felt so sick I barely ate for several days. When I returned home, I was tested for various conditions, including inflammatory bowel disease which my younger sister lives with, and by process of elimination was eventually diagnosed with IBS,” Trishna shares.

Urticaria & Angioedema

Trishna also works to manage two chronic conditions called Urticaria and Angioedema, both of which began for her in 2013, likely as a result of one of her MS treatments. Urticaria causes chronic hives and angioedema causes deep tissue swelling, often in the face. Although Trishna is currently in remission for both conditions, she notes that it took about 4 years to get the symptoms under control through medication, identifying triggers, and altering her diet. 

“I was having symptoms every day and had to be put on a high dose of steroids and antihistamines to control it,” Trishna recalls. “At one point, these conditions were distressing me more and actually having a greater impact on my life than MS was,” she remarks. “During my first episode of angioedema I could hardly open my eyes, they were so swollen. I looked as though I had been in a boxing match. It was very damaging for my confidence and self-image.”

Clinical Trial Participation

Trishna has been involved in a variety of different types of research studies for MS, including giving biological samples such as blood or saliva for genetic testing, filling out surveys or questionnaires for organizations she is a part of, and even partaking in an exercise intervention study to research what type of fitness routine is most effective for MS patients.

“I am a part of the UK MS register as well as the Twins UK register, so I fill out a lot of surveys for both groups to help drive research for these communities. During the beginning of the pandemic, I participated in a COVID-19 antibody study involving twins through this register by submitting a blood sample,” Trishna explains.

Trishna’s decision to participate in research stems from her belief that clinical trials are vital to the understanding of MS and for the improvement of treatments and access to care for patient communities. “If I can help in some way, then I will. I want to provide a better future for those of us who are living with these conditions and for the people who are yet to be diagnosed.”

Although Trishna has participated in multiple research studies, she has not chosen to join any drug therapy clinical trials. Although having been offered the opportunity, Trishna shares, “I turned them down for different reasons. When consulting with pharmaceutical organizations or CROs to help drive patient engagement, I often remind companies that it is just as important to find out why someone may have turned down a trial as it is to find out the experiences of those who chose to participate.”

In Trishna’s case, there were several reasons why she decided participation wasn’t the best choice for her, including considerations of travel, time involvement, and alternative treatments that were already available to her.

Advocacy Work

Although Trishna lives with multiple conditions, her path to becoming an advocate began the moment she was diagnosed with MS. “I was handed a list of 4 medications by my neurologist and told to come back in a month with a decision of which treatment I wanted to start. There was no help offered in terms of resources or support and it left me feeling lost,” she reflects. “I realized while I was having this experience that there were likely many other people with MS feeling just as alone and as uncertain as I felt.”

From there, Trishna stepped into the world of patient advocacy by joining different national MS organizations in the UK. She began working to raise awareness about MS through campaigning and speaking at different events. “I got involved because I wanted to bring the patient voice into the healthcare system in a way that was louder and more effective than present. I hoped to raise awareness about what it is like living with a chronic illness to try and reduce the stigma I could see happening to people living with these conditions, especially within my South Asian community,” Trishna says.

After speaking at several events, Trishna was approached by larger pharmaceutical companies, clinical research organizations, and healthcare industry professionals who wanted her consultation on their own work in patient engagement. Trishna’s consultancy work began then, focusing on advising companies on good patient engagement practices, health literacy, and improving diversity in clinical trials.

“There are many issues in the healthcare system that affect multiple patient communities. My consultancy work now spans to include a variety of different diseases and I have the opportunity to work nationally and internationally with different stakeholders,” Trishna says.

Trishna has worked on a variety of projects, with the goal to make each step of the clinical trial process more accessible and easier to understand for patients. These include designing clinical trials, advising companies on designing trial protocols, reviewing informed consent forms and other patient materials, advising vendors that are providing tools and solutions to be used during a trial, and helping to develop materials for patients when a trial has ended such as plain language summaries of clinical trial results.

“As advocates we do so many different things like campaigning, driving policy, fundraising, speaking to the media, and working with different stakeholders. I prefer to refer to myself as an advocate, not a patient advocate because I feel that term puts my condition before my work. We are people and advocates first, patients second,” Trishna explains.
National Recognition

Early on in her work, Trishna didn’t realize what she was doing was considered advocacy, noting, “I was just doing what I felt needed to be done.” The impact of her work hit home for Trishna in 2013 when she was awarded the MS Society Volunteer of the Year Award. Since then, Trishna has received many other awards for her work, including a Points of Light Award in 2018, an Honorary Membership of the Faculty of Pharmaceutical Medicine, a Faculty of the Royal Colleges of Physicians of the UK in 2021, and the opportunity to participate in a special 4-part edition of the hit TV series, Strictly Come Dancing, the UK equivalent of Dancing with the Stars.

After the show aired, Trishna recalls being inundated with messages of gratitude and support on social media from viewers who shared that her story had helped begin conversations among friends, family members, and in communities.

“It was such an amazing experience and opportunity for my advocacy work. I got to go on national TV as an Asian person living with MS, an invisible disability, and spread awareness among people who may have known nothing about the disease previously,” Trishna notes. “The legacy has been that we were able to educate so many people as a result.”

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