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Ms. Vandana Mahajan Unveils Achievements in Cancer Advocacy

Ms. Vandana Mahajan Unveils Achievements in Cancer Advocacy

Empowering Hope: Ms. Vandana Mahajan Unveils Achievements in Cancer Advocacy | Cancer Conclave 2024

Hello Vivekji, thank you for the warm welcome. Today is World Cancer Day, and I’m grateful that I got an opportunity to communicate to you on cancer advocacy. Now, I’ll be sharing a presentation with you all – it covers cancer advocacy worldwide, how it’s evolving, the changes it’s making, and our efforts here in India.

But first, let me introduce myself. I’m Vandana Mahajan, a counselor specializing in cancer care and palliative care. I’m also deeply passionate about advocating for patients. I’ve also personally faced cancer myself, so I understand the struggles firsthand.

When I was diagnosed, my family and I felt lost and alone. We didn’t have the support we needed. So, I feel, it’s crucial to talk about the importance of cancer advocacy and how it affects families. I had great doctors, but there was no one to guide my daughter, support my husband, or prepare me for what to expect. Even after treatment, there was little support for survivorship. That’s when I realized I needed to step up and support the cancer community.

Let’s now talk about Advocacy in cancer care. For that, we need to understand what is cancer advocacy. So, the latest statement by WHO(World Health Organization) says that by 2050, the cancer burden is going to increase by 77%, which is scary. And if we don’t do anything now, then when will we?

So, the cancer community worldwide actually believes that all of us together should support the cause of cancer, not only from a treatment perspective but also in cancer care.

How to do that? Advocacy plays a pivotal role in cancer control, and planning, and is necessary in any resource setting to influence policy and improve the delivery of cancer control. 

The WHO 2008 Practical Guide on Cancer Control Policy and Advocacy and the 2013 to 2020 Global Action Plan for the Prevention and Control of Noncommunicable Diseases (NCDs) both articulate that advocacy is a critical strategy in improving cancer control and care delivery nationally and globally.

Definitions of cancer patient advocacy vary in the literature, here, we define advocacy as a systemic approach to promoting a cancer-related issue and motivating others to take action.

What is cancer advocacy? 

Cancer advocacy provides a framework to ensure meaningful involvement of the community in decisions affecting patient lives. It is recognized that cancer patient advocacy provides a voice for patients and raises awareness of needs. 

Patient advocacy is deeply rooted in the concept of empowerment. When we talk about empowerment we mean we involve patients and caregivers by encouraging them in participating in their own care. So this is all about patient advocacy.

 But how can advocacy happen? For any advocacy to happen we need people. Who are these patient advocates? In the cancer community, an advocate supports a cause or policy regarding cancer. Cancer advocates work on a local or national level. 

What do they do?

  • They provide support to those living with cancer.
  • They raise public awareness about the disease.
  • Advancing cancer research
  • Improving the quality of care
  • Addressing legislative or regulatory issues that affect cancer care and research.

What are the roles of a patient advocate?

They act as a bridge between patients, family members, and the research communities and clinicians. They need to strengthen their bond. So what do they do –

  • They fill support roles for newly diagnosed patients.
  • Engage in fundraising activities for cancer research.
  • Serve on grant review panels
  • Educate the local communities about their latest treatments
  • Provide resources such as transportation to treatment centers.
  • Moderate social media sessions
  • Raise awareness of cancer events and advancement.

When patient advocates come together we form patient advocacy groups. We can’t do anything on our own. Therefore we need patient advocacy groups.

What is the role of patient advocacy groups?

  • As per the NCCN (National Comprehensive Cancer Network) guidelines patient advocacy groups help patients, their families, and caregivers to navigate the cancer landscape.
  • These groups work to ensure patients receive the appropriate and timely care, education, and financial assistance we need.
  • Cancer advocacy groups have been a potent influence in high-income countries in raising awareness about the cancer burden and directing public and private efforts and resources to cancer control.
  • In most low and middle countries(LMCs), where cancer is a low priority, advocacy is largely undeveloped.
  • Cancer control deserves higher priority based on its large and increasing burden of disease.
  • Advocacy has a role to play in bringing the public’s concerns about cancer to decision-makers.

Types of Cancer advocacies in the world

  1. Educational Advocacy – educating and raising awareness
  2. Political Advocacy – Addressing legislative and regulatory issues affecting cancer care and research.
  3. Research advocacy
  • Raising money for cancer research
  • Supporting research through clinical trials
  1. Support advocacy – Improving the quality of cancer care (pain relief, eolc, survivorship challenges, delivery of care during the treatment phase.)
  2. Fundraising advocacy
  3. Community outreach advocacy

Let’s look at –

The types of cancer advocacies in India

  • Educational Advocacy
  • Support advocacy
  • Fundraising advocacy

There is a lot of work happening in these above-mentioned cancer advocacies from capid India i.e. doing amazing work for cervical cancer patients, Can Kids is doing exceptional work for cancer in children, and Lungconnect India is supporting patients in pan India and neighboring countries through different advocacies including emotional support, reaching out to children, and treatment advocacies, and then we have the Indian Cancer Society doing tremendous work in cancer advocacy.

But still, India lacks the following –

  • Advocacy for cancer research and clinical trials: Being done by NIHR( National Institute for Health and Care)
  • Political Advocacy
  • Community Outreach Advocacy

Impact of Cancer Advocacy in the Last Decade 

  • The past decade has seen the creation of a global framework to drive improvements in the prevention, diagnosis, treatment, and care of cancer patients.
  • The 2017 cancer resolution, the Global Action Plan on NCDs, WHO cost-effective recommendations for NCDs, and the sustainable development goals are global health commitments that are interconnected, building on each other to provide countries and stakeholders with a framework to develop and deliver comprehensive services.
  • Each of these commitments reinforces the need for core investments in cancer prevention, early detection, treatment, and care services as an essential part of the health system’s response to the growing global burden of cancer in terms of mortality, morbidity, and contribution to poverty.
  • Prioritizing evidence-based approaches and a core package of services for impact on patient outcomes.
  • Prioritizing cost-effective interventions.
  • Integration of cancer-control efforts with NCD plans.
  • Integration of cancer-control efforts with infectious disease, child, and maternal health services 
  • Non-profit and academic institutions have focussed their research and marketing strategies on prolonging survival via cure and prevention
  • In response to improved survival rates, cancer advocates had begun to place equal emphasis on prolonging survival and improving quality of life.
  • Alongside research investment, cancer advocacy efforts have helped improve the detection and survival of some cancers and even offer a cure.

We need stronger advocacy to accomplish our goals. 

Areas that need stronger advocacy are –

  • Addressing family caregiver support needs,
  • The high cost of cancer treatments,
  • Symptoms and late effects that cause substantial preventable suffering
  • Long-term health consequences of cancer treatment
  • Making palliative care services more widely available
  • Promoting communication training
  • Integrating psychosocial and rehabilitation services in clinical settings
  • Public policy

Challenges in running cancer advocacy in India

  • The first and foremost challenge is the stigma and myths associated with the disease.
  • Due to the stigma people diagnosed do not want to disclose their conditions. So they do not participate in advocacy forums.
  • Knowledge gaps
  • Limited organizational capacity and resources
  • Lack of funding
  • Lack of collaboration between stakeholders

How can all stakeholders come together and build a stronger ecosystem to support cancer patients in India?

  • Educational Advocacy       

          Goals: To inform and educate cancer patients and their family/friends

  • Political Advocacy

Goals: Impact public policy through lobbying. This can be at the state, city, or village level. If any of the stakeholders is in a position of power they can make recommendations for a cancer action plan at either the state or local level. 

  • Research Advocacy

Goals: To ensure high-quality research that is sensitive to the priorities of cancer patients. This may mean more targeted therapies that offer high quality of life and easier treatment needs.

  • Support advocacy

Goals: To provide support to cancer patients and their families. This can be in the form of emotional, financial, nutritional, and physical assistance.

  • Fundraising advocacy

Goals: to raise money for either the cancer research, support services, patient education, and community outreach

  • Community outreach advocacy

Goals: to reach out to the community in a manner that encourages a two-way dialog. This type of advocacy often partners with a local health organization or professional group.

Why to Advocate?

“Unless someone like you cares a whole awful lot, nothing is going to get better, It’s not”

Thank you very much….

Learn More – Watch the Video

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