Patient Advocacy Resources to Combat COVID-19
Nonprofit patient advocacy leaders have created a number of resources to help patients with cancer navigate their treatment and care during the COVID-19 pandemic. To help and inform our community, we are sharing these resources in one central list. We will be updating this list regularly.
“We recognize the impacts that uncertainty and fear, social isolation, the flood of negative news, and dearth misinformation can have on the physical, emotional, mental, and spiritual wellness of our global community. This is even more troublesome for cancer patients who must navigate access and treatment issues. We have made a commitment to our community to provide the most updated resources to support them during this pandemic.” – Melinda Bachini, CCF advocacy coordinator and AACR Scientist↔Survivor Program® advocate.
- A Cure in Sight
- American Brain Tumor Association (ABTA)
- American Lung Association
- Cholangiocarcinoma Foundation
- Coalition Against Childhood Cancer
- Debbie’s Dream Foundation: Curing Stomach Cancer
- Fight Colorectal Cancer (Fight CRC)
- Imerman Angels
- International Brain Tumour Alliance (IBTA)
- LUNGevity Foundation
- Melanoma Research Foundation
- Pancreatic Cancer Action Network (PanCAN)
- Patient Access Network (PAN) Foundation
- SHARE Cancer Support
- Stupid Cancer
- Susan G. Komen
- Triage Cancer
A Cure In Sight
A Cure In Sight™ or ACIS’s mission is to provide patient services for ocular melanoma eye cancer patients. Services are provided through building public awareness, educating OM patients and their caregivers, funding on-going eye cancer research and, by financially helping OM patients find and pay for the treatments they need.
In an effort to help our patient population during the COVID-19 outbreak, A Cure In Sight has added a coping skills and nutrition segment to our newsletter. We have also implemented a weekly Zoom meeting for people to connect and have conversation with their peers. During this time of limited social engagements, we wanted to give our community a place to connect and see each other face to face.
American Brain Tumor Association
Founded in 1973, the American Brain Tumor Association (ABTA) was the first national advocacy organization committed to funding brain tumor research and providing information and education to patients, caregivers, and their loved ones. For 46 years, the ABTA has been providing comprehensive resources that support the complex needs of brain tumor patients and caregivers, as well as the critical funding of research in the pursuit of breakthroughs in brain tumor diagnosis, treatment and care.
The American Brain Tumor Association’s mission is focused on improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis. We:
- Fund brain tumor research in the U.S. and abroad
- Support and educate patients, caregivers, loved ones, and the general public
- Collaborate with others to increase impact, reduce duplicity, and achieve the greatest results for the brain tumor community
The ABTA is increasing our communication regarding COVID19, expanding education through webinars COVID-19 and the Brain Tumor Community, COVID-19 and Brain Tumors, An Update, our Covid-19 Webpage, and through social media. ABTA Facebook, Twitter and LinkedIn, along with “Ask the Expert” programs on our online support community Connections.
American Lung Association
The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease through education, advocacy and research. We support the 36 million Americans that live with a chronic lung disease, including asthma, COPD, lung cancer and more. Whether it’s searching for cures to lung diseases, keeping kids off tobacco or advocating for laws that protect the air we all breathe, the work of the American Lung Association helps to save lives every day.
As the nation’s leading voluntary lung health organization, the American Lung Association is launching a $25 million initiative to end COVID-19 and defend against future respiratory virus pandemics. The COVID-19 Action Initiative will be used to expand the Association’s ongoing respiratory research program, enhance key public health measures, and establish an advanced network to stop future respiratory virus pandemics. The initiative will also work with public and private entities to increase research collaboration and develop new vaccines, detection tests and treatment therapies. Learn more and get involved at Lung.org/cv19-action. In addition, we are providing daily updates for our constituents about COVID-19 and how it impacts their lung health including webinars, online support communities, and articles of interest.
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our staff of social workers and specialists are working tirelessly to help callers cope with stress and anxiety related to changes in treatment plans, economic uncertainty, feelings of isolation and much more.
To support our clients facing the dual challenges of cancer and COVID-19, we transitioned our in-person individual and group counseling to the telephone in early March, and our standard telephone and online services are operating as usual. On March 20, CancerCare opened a financial assistance fund for those impacted by COVID-19 and cancer. We have written multiple fact sheets related to COVID-19, social distancing, anxiety and speaking with children about the coronavirus and continue to develop additional publications. On March 30, we also held an educational workshop via telephone and webcast featuring medical experts (a recording is available on our website), and a follow-up program has been planned for April 20 to ensure we can keep our clients as up-to-date as possible. To view all of our resources, visit our coronavirus landing page.
The Canines-N-Kids Foundation is a charitable nonprofit committed to finding a cure to the devastating cancers that canines and children face in common, including bone cancer, brain cancer, lymphoma and leukemia.
Requests from children’s hospitals nationwide for Canines-N-Kids Foundation’s (CNK) Project Hearts & Tails’ care packages have grown rapidly since COVID-19 has brought stricter isolation measures to pediatric oncology units. Launched recently, Project Hearts & Tails delivers hope to kids diagnosed with cancer as well as attention to the shared cancers that dogs and kids both develop. The care packages come with a cuddly stuffed black lab pup, aptly named “BRAVE,” to accompany kids on their treatment journeys, Canines-N-Kids’ book “We’ll Get Through This Together,” and a red baseball cap co-branded with the iconic Black Dog Tavern Company logo. In We’ll Get Through This Together!, a pet black lab shares his perspective of joining a boy going through every step of his cancer treatment.
The Cholangiocarcinoma Foundation’s (CCF) mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer). CCF brings together the clinical, medical, research, and industry communities with patients and caregivers. CCF has become the leading global resource for research, education, and public awareness around this rare, deadly cancer.
We have compiled and will continue to curate a list of the most relevant resources, links and posts on our website to help patients with cholangiocarcinoma navigate through these unprecedented times. Visit our Facebook or LinkedIn pages to meet others in the community. Join and Contribute to our online discussion board, where you can learn and share with others on relevant cancer topics such as chemotherapy, grief management, nutrition and more. Sign up at our website so you are getting the most updated offerings. Our staff and teams of volunteers are here for anyone who needs to talk or connect. Our ears and our hearts are open. If you need someone, Email or call us at (888) 936-6731.
Coalition Against Childhood Cancer
CAC2 is a collaborative network of more than 175 nonprofits, corporations, and individuals from 34 states and five countries, supporting and serving the childhood cancer community. CAC2 effectively advances a variety of childhood cancer causes by unifying the childhood cancer community through educational efforts and by creating processes to help us choose, refine, and complete collaborative projects together. CAC2 offers childhood cancer patients, survivors, and their families a “one‐stop” source of information and brings together professionals and advocates working to accelerate advances in pediatric cancer research to discover new and better treatments – and, ultimately, cures.
CAC2 is responding to the Covid-19 crisis in two ways, advocacy and education. Advocacy–we mobilized members to support inclusion of nonprofit provisions in the CARES Act and are currently offering sign on letter opportunities for expanding nonprofit protections in the next relief package.
Education–we created a compendium Member Guide to Navigating Covid-19 that explains what the $2.2 trillion CARES Act economic relief package means for nonprofits, donors, and individuals, and gives members personal actions that they can do when they ask themselves “what can I do?” We also created a form that our members could submit overlooked essential resources here: Suggest a Resource for the Guide.
Debbie’s Dream Foundation: Curing Stomach Cancer
Debbie’s Dream Foundation: Curing Stomach Cancer (DDF) is dedicated to raising awareness about stomach cancer, advancing funding for research, and providing education and support internationally to patients, families, and caregivers. DDF seeks as its ultimate goal to make the cure for stomach cancer a reality.
DDF continue to accept patient inquiries and requests for mentorship for our Patient Resource Education Program (PREP), and continue to offer Monthly Stomach Cancer Support Groups and Free Stomach Cancer Educational Webinars. We most recently hosted a webinar titled, “Coronavirus: What the Stomach Cancer Patient Needs to Know,” to help address some of the main concerns from the stomach cancer community during these uncertain times. These are critical support services that stomach cancer patients and caregivers need now more than ever.
Fight Colorectal Cancer (Fight CRC)
Fight Colorectal Cancer (Fight CRC) is the leading patient-empowerment and advocacy organization in the United States, providing balanced and objective information on colon and rectal cancer research, treatment, and policy. We are relentless champions of hope, focused on funding promising, high-impact research endeavors, while equipping advocates to influence legislation and policy for the collective good.
Fight Colorectal Cancer (Fight CRC) is providing up to date COVID-19 related information on its website. Our latest blog topics around COVID-19 include immunosuppression, clinical trials, congressional action to support patients, and screening and treatment during the pandemic. We are also providing our patient community with psychosocial support through resources and our ‘Wellness Wednesday’ on Fight CRC’s Facebook.
Imerman Angels’ mission is to provide comfort and understanding for all cancer fighters, survivors, previvors and caregivers through a personalized, one-on-one connection with someone who has been there.
We have been needed more now than ever! Imerman Angels’ created an all-inclusive resource page: Imerman Angels COVID-19 Resource Packet. We have also created a how to communicate during this time: How to stay connected virtually
International Brain Tumour Alliance (IBTA)
The International Brain Tumour Alliance (IBTA) is a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organizations and others involved in the field of neuro-oncology. Across the globe in over 100 countries we work with Alliance supporters, prospective supporters, researchers, medical professionals, pharmaceutical and device companies, government agencies, regulators, medical societies, key opinion leaders, the media and others. By working together, we identify collaborative actions across the international community and work towards our vision of a world free from the fear of brain tumours.
IBTA created a number of COVID-19 resource documents for the international brain tumour community (links to official government information on COVID-19 for nearly 100 countries, COVID-19 and cancer links, brain tumour charities and not-for-profits COVID-19 information, medical society COVID-19 information, etc) that can be accessed at https://theibta.org/covid-19/. Additional information is provided through a COVID-19 announcement, a COVID-19 joint statement from UK brain tumour charities and the not-for-profit IBTA, and an article published in the IBTA March e-News with COVID-19 information.
LUNGevity is committed to changing outcomes for people with lung cancer through research, education, and support.
Video: Understanding COVID-19 and How to Stay Safe
The resources for lung cancer patients can be found on the special website that we created (available in both English and Spanish), www.lungevity.org/COVID19. It includes information on: COVID19 FAQ’s for people with lung cancer; conversations with experts including interviews with thoracic oncologists, radiation oncologists, thoracic surgeons, pulmonologists and psychologists (including interviews in Spanish and one in Mandarin to be posted shortly); a glossary of COVID 19 terms; a section on self-care including recipes, exercise videos and yoga; and, Access to LUNGevity’s Emergency Fund, Breathe Easier, for financial support to lung cancer patients in active treatment who fall within 300% of the FPL.
Melanoma Research Foundation (MRF)
The Melanoma Research Foundation (MRF) is the largest independent organization devoted to melanoma. Committed to the support of medical research in finding effective treatments and eventually a cure for melanoma, the MRF also educates patients and physicians about prevention, diagnosis and the treatment of melanoma. The MRF is an active advocate for the melanoma community, helping to raise awareness of this disease and the need for a cure.
The Melanoma Research Foundation (MRF) is working to ensure all members of the melanoma community are informed and supported during the unprecedented time of the COVID-19 pandemic. Melanoma research projects continue, driven by the dedicated researchers striving to find a cure for melanoma. Researchers are also expanding their work and now focusing on the development of a COVID-19 melanoma patient registry in order to better understand the impact on patients. New virtual and electronic educational content is provided on a weekly basis and COVID-specific information and resources are regularly added to our COVID-19 & Melanoma resource page.
Pancreatic Cancer Action Network (PanCAN)
The Pancreatic Cancer Action Network (PanCAN) is dedicated to fighting the world’s toughest cancer. In our urgent mission to save lives, we attack pancreatic cancer on all fronts: research, clinical initiatives, patient services and advocacy. Our effort is amplified by a nationwide network of grassroots support. We are determined to improve outcomes for today’s patients and those diagnosed in the future.
To address the COVID-19 crisis, PanCAN has created pancreatic cancer specific information including blogs, patient and caregiver resources, and a webinar series: Navigating Pancreatic Cancer Care During the Coronavirus Crisis. PanCAN also offers one-to-one support for patient and their families through Patient Central, where our case managers provide free, personalized information and resources. Contact Patient Central M – F, 7 a.m. – 5 p.m. PT.
Patient Access Network (PAN) Foundation
The Patient Access Network (PAN) Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. Partnering with generous donors, healthcare providers and pharmacies, PAN provides the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life.
To help affected patients cope with unprecedented financial stress relating to the COVID-19 outbreak, also known as coronavirus, the PAN Foundation is providing direct assistance of $300 on a pre-paid debit card for individuals who have been diagnosed with COVID-19 or directed to self-quarantine due to COVID-19. For more information about this program: https://panfoundation.org/index.php/en/13-patients/942-covid-19
SHARE Cancer Support
SHARE is a national nonprofit that supports, educates, and empowers women affected by breast, ovarian, uterine or metastatic breast cancer, with a special focus on medically underserved communities.
In reaction to the coronavirus pandemic, SHARE has made all of it’s support programs available online. You can access our Helplines, support groups, and educational programs from the comfort of your ho me. Call our Helpline 1.844.ASK.SHARE or visit sharecancersupport.org to learn more. To Follow SHARE’s COVID-19 updates, visit sharecancersupport.org/category/coronavirus.
Stupid Cancer’s mission is to empower adolescents and young adults affected by cancer by ending isolation and building community. We offer a lifeline to the AYA community by connecting them to age-appropriate resources and peers who get it.
With increased isolation due to the global pandemic, we offer opportunities for AYAs to connect and learn about the impacts of COVID on their treatment and survivorship. Through our Digital Meetups and Stupid Cancer Stories, participants can connect with one another and share stories. Our webinars program provides expert-led sessions on issues AYAs face, compounded by the global crisis. Help us understand the pandemic experience better by taking part in our COVID study To Follow Stupid Cancer’s COVID-19 updates, visit stupidcancer.org/covidupdates/.
Susan G. Komen
Susan G. Komen is the world’s leading nonprofit breast cancer organization, working to save lives and end breast cancer forever. Komen has an unmatched, comprehensive 360-degree approach to fighting this disease across all fronts and supporting millions of people in the U.S. and in countries worldwide. We advocate for patients, drive research breakthroughs, improve access to high-quality care, offer direct patient support and empower people with trustworthy information. Born out of a promise between two sisters, Susan G. Komen remains committed to supporting those affected by breast cancer today, while tirelessly searching for tomorrow’s cures.
In response to the COVID-19 pandemic, Susan G. Komen is regularly providing information to our constituents across multiple channels, all of which is available via Komen’s Blog – The Komen Connection. Additionally, Komen has added a coronavirus and breast cancer page to our about breast cancer section. Individuals in need of support should contact the Komen Breast Care Helpline, 1-877-GO-KOMEN (1-877-465-6636), which provides information, psychosocial support and help with coping strategies related to anxiety or concerns during these uncertain times. The service is offered in English and Spanish from 9:00am-10:00pm ET. Email the helpline directly at [email protected].
Triage Cancer is a national, nonprofit organization that provides education on the practical and legal issues that may impact individuals diagnoses with cancer and their caregivers, through events, quick guides, and cancer resources.
We recently published this blog with various financial and insurance resources related to COVID-19: https://triagecancer.org/comprehensive-updates-financial-insurance-resources-covid-19. We will continue to post blogs related to COVID-19 as changes impacting finances, health insurance, and employment at the federal and state level continue to occur at https://triagecancer.org/blog. We are also hosting a free webinar, in partnership with AOSW, on April 21, 2020, discussing Key Changes to Insurance, Finances, & Work During COVID-19. The webinar will provide an up-to-the-minute information about changes to health insurance and employment, including new options for paid sick leave, paid family leave, and unemployment benefits. Lastly, stay tuned for our new Quick Guide on key changes to insurance, finances, and work during COVID-19.
Access more information at the AACR Coronavirus Resources page.