Patient Advocate Education Awards

I was diagnosed with NSCLC with the ALK positive mutation in September 2018. In the following year, I attended an Australian Lung Cancer Conference hosted by Lung Foundation Australia to learn about being a Lung Cancer Patient Advocate.  As a Patient Advocate for Lung Foundation Australia, I presented my story and experiences to politicians at Parliament House in 2019 and sought more resources, namely dedicated lung cancer nurses, to be funded in Australia. I am also an active member of several Lung Cancer support groups and have made some good contacts and friends in the Lung Cancer community.

Through membership of ALK Positive Facebook support groups both Internationally and Nationally, I and 5 others are currently establishing ALK Positive Incorporated, an Australian Charity aimed at ALK+ Lung Cancer patients and carers.  The Charity aims are: 1) Connect ALK+ patients and carers in Australia (without the need of social media). 2) Provide an educational and resource location (website) that assists ALK+ diagnosed people to easily find local and International information about their cancer. 3) Provide links to relevant support groups. 4) Enable Australians the ability to make tax-deductible donations to fund ALK+ targeted research and support. Our team's goal is to establish the charity structure, administrative processes, and websites that are ready for broader community membership.   In addition to this, I have recently organised a continuous small monthly gathering of fellow ALK+ members in Perth, WA.  This year through the Lung Foundation as a Patient Advocate I have: - Attended the Australian Lung Cancer Conference.  - Provided perspectives on "The Next Breath," a Lung Cancer Blueprint for Lung Foundation Australia; - Reviewed patient-focused documents and provided feedback for a pharmaceutical company.  I currently plan to: - Continue as Patient Advocate for Lung Foundation Australia to assist them on an ad-hoc nature; - Continue to drive and complete the key aims of the ALK Positive Inc charity; - Assist fellow Lung Cancer patients where I can see an opportunity.

ALFARWA, in one of Nigeria's indigenous languages (Hausa Language), means "the tent". As part of the culture, men gather together every night after the day's activities to eat and gist. This is one major platform I use for Lung Cancer advocacy. Here, we discuss issues about not just Lung cancer alone but daily healthy lifestyle choices and matters around men. Because most of these people are not on any social media platform, we decided to bring the information down to their doorstep where they can listen and learn in a language that they understand and interpret well.  A healthy lifestyle, good food, avoiding smoking, and other risk factors that can endanger their lives are the focus of this weekly meeting.  In addition, we do health talks in Places of religious worship and among several age groups, most especially the youth and young adults.  WhatsApp is another means of sharing daily lung cancer information and broadcasting to people who are on my contact list.

MACA is an organization focused on cancer awareness, education, and research, with lung cancer taking center stage. Lung cancers because statistics have it that about 70% of those diagnosed with lung cancer in Africa (Nigeria) are people who are nontobacco users. This means that, if not tobacco, then other risk factors are responsible for the increased death due to lung cancer. Hesitancy for early diagnosis is another major challenge. As an intern with the organization, I am committed to advocating for early diagnosis and screening, providing support to those undergoing treatment at the Oncology Department of the National Hospital Abuja.

MACA is committed to the welfare of lung cancer patients at the National Hospital Abuja. As a team, we have a stand in the oncology unit where we arrange activities based on urgency of fluid samples which helps to bridge the gap in treatment such that test results can be received in a good turnaround time. We identify lung cancer patient visiting the hospital using their ID, reassuring them of a safe and prompt treatment option by answering questions and offering useful information. We also collaborate with recognized diagnostic laboratories across the city of Abuja where patients can be referred to for real-time cancer screening.  Also, for most patients visiting the hospital, their cancer is often diagnosed at a late stage, which has been the main cause of delay in treatment, sometimes leading to the disease getting advanced to the terminal stage. So we do not wait till the people are sick and visit the hospital; we go into the community to talk to them about Lung cancer. This is geared towards reducing the morbidity and mortality of the disease.  We have posters, leaflets, caps, t-shirts, and wristbands that talk about Lung cancer in the indigenous language that is simple to read and easy to comprehend.  We also give financial assistance to people who are convinced and willing to go for testing. We recommend them to recognized and accredited laboratories for lung cancer testing.  My ability to understand and communicate fluently in the three major Nigerian languages, including English, is an added advantage in the advocacy and Lung cancer awareness drive, especially in communities around Abuja, the federal capital territory of Nigeria.  I also do weekly cancer sensitization and broadcasts on WhatsApp for the benefit of those who are using the application.

Fundacion de Alba, founder of United Lung Cancer Front, alongside 2 other organizations, works to provide awareness on lung cancer: risk factors, symptoms, screening, and innovation in treatment. Health literacy for patients and caregivers through workshops. Collaborative initiatives with the Academia to generate data on lung cancer statistics in Mexico as well as innovative and alternative financing sources for access in the public health system. I am also a member of the UICC and have participated in webinars with lung cancer organisations like Lovexair.

As part of the United Lung Cancer Front´s 2023 strategic plan, we will continue with the awareness campaign on symptoms and risk factors and will include information on precision medicine (PM) using the Fronts´ social media as well as the three organizations.  We are also including this subject, PM, as part of the training course for specialists. A screening program includes different stakeholders such as laboratories, farmaceutical companies, and health system specialists, where the Front will be coordinating patient navigation and further follow-up of patients. We are also actively working and will continue to work with stakeholders at different governmental levels, locally and nationally, in order to guarantee equal and quality comprehensive access for lung cancer patients through workshops and legislative forums.  

Along side with the Academia, including prestigious investigation institutes and colleges, two studies on lung cancer issues have been published by the Front: "Cancer and social inequities 2020" and "An estimate on lung cancer treatment costs" 2022, which were socialized through press conferences, media interviews and shared with stakeholders. The core work of the Front is patients and caregivers through its navigation program. Through focus groups and individual interviews, we have important and valuable information to build the awareness campaign and also to understand patients' needs. We have been able to navigate patients through a very complex and fragmented to access comprehensive health care. Recently, on April 5, Mexico´s Lung Cancer Day, the Front presented a documentary picturing two patients' journies to sensibilize and raise awareness.

I am currently attached to two lung cancer Organizations named "PRAYAS & MAS Rural Initiative" in Rural India. We try to improve the quality of life of the Lung Cancer patients in our area. I have always tried to visualise my ideas and experiences to the people through my speech. I am personally working on finding gaps in specifically nonsmoker lung cancer patients.  This work is challenging, but it has a great purpose, and I am really enjoying it. My areas of particular interest include counseling, programming, training, and support services for people with metastatic lung disease.

I observed that due to financial incapability and the absence of manpower, poor families often fail to carry their cancer patients to the hospital. I still make regular phone calls to these lung cancer patients who are newly diagnosed. I marvel at the changes in cancer treatment these days. Working with the newly diagnosed keeps me educated and up-to-date. Until we find the causes and the cures, I will continue my advocacy work.  I also attend to terminal patients who need some kind of palliative care at any time of the day or night. Over the last 15 years, I have made about 10,000 home visits for this type of care. Apart from this, we have telephonic communication with these patients from our hospital 24 hours a day. I as well as I am also a home caregiver and hospital caregiver. Caregivers play a critical role in the treatment, support, and recovery of individuals with lung cancer, yet oftentimes, their emotional and informational needs get overlooked. Caregivers have such a meaningful role in cancer care, and it is important to recognize and address their needs. These needs vary based on the health of the care recipient, the physical and emotional needs of the recipient, the resources of and the demands on the caregiver, as well as the family or relationship dynamics. So, advocates, as well as caregivers, are more realistic in supporting cancer patients. During regular home visits and telephone communication, I observed three important thoughts: 1) In providing regular physical and emotional support to the patients and their families, 2)  In significantly reducing the financial and manpower problems of carrying patients to the hospital. & 3) In improving the quality of life of patients by continuous guidance.

In the spring of 2020, I went in for a COVID test and walked out with a lung cancer diagnosis. That's the shorthand of the story. I am 2 1/2 years into treatment for EGFR mutation-driven stage IV lung cancer with osimirtinib, which has kept the cancer stable but not achieved NED. I feel a responsibility to be an informed, active partner with researchers and clinical practitioners so I can be a better communicator in my advocacy projects. Communing together also bridges that distance between patient and medical professional that allows for empathy, which elevates us all.

I maintain a professional website, www.annabellegurwitch.com, which includes a page specifically devoted to lung cancer-related subjects, including updates on my personal journey, issues I am dedicating my advocacy energy towards, and resources for information for patients. A few months after I was diagnosed, I started a podcast on the Maximum Fun Network called Tiny Victories- it's a tiny podcast in which my co-host, comedian, and meditation teacher Laura House spotlights minor accomplishments and small mercies, something I have found essential to my mental health since covid/cancer treatment. Some in the community follow the podcast, and I hear from people in treatment that it is rewarding practice for them to cultivate a "tiny victory frame of mind," as we refer to it. (https://maximumfun.org/podcasts/tiny-victories/) I am also an active member of the EGFR Resisters private Facebook group, in which patients share personal experiences, information, and encouragement with each other. 

I was diagnosed with stage 4, ALK-positive lung cancer in August 2021. Before this, I was healthy and blissfully unaware that anyone could get lung cancer. I was a very career-focused, busy mother of twin teenage sons - heading up global communications and social media for a global professional services organisation in London.  Since diagnosis, I've become Chair of ALK+ International, the only UK-registered charity focused on funding medical research into all ALK cancers. I also volunteer for the US charity ALK Positive Inc. and am a member of Lung Cancer Europe. Keen to do more in research advocacy and funding.

Through the above-mentioned charities and personally, I'm involved in fundraising for lung cancer research, advocating around key issues (like biomarker testing), creating more awareness that anyone can get lung cancer, and collaborating with the key members of the lung cancer community - from medical professionals/oncologists, researchers, pharma, and the public. Specifically, I'm actively leading ALK+ International's social media accounts, personally managing our Twitter and LinkedIn and supporting the Trustees who manage our Facebook and Instagram accounts. Our messaging is focused on creating awareness generally/awareness of ALK and other oncogene lung cancers, inspiring hope by promoting lung cancer research, and encouraging donations.  

I personally led ALK+ International and ALK Positive Inc.'s joint LCAM22 campaign called #MoreResearchMoreLife. In this campaign, and with some great volunteers, we shared over 120 patient stories and featured over 30 oncologists, researchers, and pharma community members, including the IASLC's Drs Stephen Liu and Narjust Florez, amongst others.  I'm now looking at having an 'always on' social media campaign that raises awareness of lung cancer generally in an engaging way and steps up during LCAM on the need for more research.  

While ALK+ International is less than one year old, we're about to provide our first grant to support research into various oncogene cancers in the UK. We're also increasing our membership and engaging our community to create more awareness of ALK lung and other cancers by sharing patient stories - see https://www.alkinternational.org/alk-stories  I have been personally involved in advocating for more biomarker testing with the Institute of Cancer Research - see: https://www.icr.ac.uk/news-archive/experts-call-for-better-cancer-tests… and https://www.icr.ac.uk/blogs/science-talk/page-details/bbc-radio-5-live-…. I'm looking at another potential biomarker campaign for ALK+ International with a pharma company.  I've begun networking with lung cancer researchers involved in ALK+ and other lung cancer research and have reviewed patient abstracts for research grants.