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Unveiling the Future of Cancer Advocacy 2024 | Vivek Sharma, Uhapo | Cancer Conclave Highlights

Unveiling the Future of Cancer Advocacy 2024 | Cancer Conclave Highlights

Unveiling the Future of Cancer Advocacy 2024 | Vivek Sharma, Founder – Uhapo | Cancer Conclave Highlights

Hello, I’m Vivek Sharma, and I warmly welcome you to The Cancer Conclave 2024. Today, we’re here to talk about various aspects of cancer, which we refer to as “Cancer Advocacy”.

So, Why is advocacy important and what role does it play? Let’s delve into that topic in detail today with us.

This is a topic that is unique and has a different aspect that many people are unaware of. But before we continue, let’s try to understand what patient advocacy is.

On the screen, you’ll see an image. In this picture, you’ll witness the scene where Lakshman is injured, and Lord Rama is holding him in his arms. At that moment, Hanuman Ji was asked to bring a specific herb, but instead, he brought the entire mountain. I know you all are discussing cancer-related topics, and we are all involved in it.

What you see on the screen is not a situation resembling cancer. Lord Rama is very strong and capable, but even then, he cannot do anything because his family is injured. There are many people around. Everyone is giving advice, but no one can do anything.

Vyadji says, “This is the medicine you need.” Now, the caregiver, Hanuman, goes to find it, but he doesn’t know where the herb is. Who will find it? So, he ends up bringing the entire mountain.

Today, the situation with cancer is somewhat similar. We need someone to advocate for us. Just like doctors, they have their limitations. We don’t need to go to extremes. Many things have changed today. All we need now is the cure. Whether it’s chemotherapy, immunotherapy, or targeted therapy, the most important thing is how do we access it, and how we make it happen.

In Uhapo’s study, we talked to over 700 patients. We noticed a common pattern. When we have physical troubles like stomach aches or headaches, we talk about them. But when we’re feeling down emotionally, we often keep it to ourselves. However, it’s important to recognize that our emotions and our reality are connected. This is how we assess a patient’s life, and it’s important to keep doing so.

When someone is diagnosed with an illness, their whole life changes. They have many questions and their illness can progress differently for each person. Later on, many people will discuss cancer screening. They’ll ask how it works.

Patients face various emotions like frustration, hope, nervousness, and positivity as time passes. On the screen, you’ll see six stages. At each stage, the patient’s needs change. But the main issue is that cancer patients often don’t know what they need. We all must collaborate.

Cancer is complex, and there’s still a lot to deal with. So, what are the problems? What kind of problems do we face? A big challenge in dealing with cancer is knowing where to go and who to talk to, which we call navigation. When we meet others going through similar struggles, it gives us the courage to fight. However, there’s also emotional turmoil as our roles change from being friends or doctors to being cancer patients or caregivers.

Cancer brings pain and functional issues, and society treats us differently with sympathy. Sometimes, there’s no sympathy, and people handle it unprofessionally. We’ve seen and heard that cancer is very expensive, leading to financial strain.

Now, what can we do about it? Advocacy isn’t just limited to this platform. There are many other platforms where a lot of work has been done, even if it’s not widely known. Advocacy is crucial at five levels.

Firstly, there’s hospital advocacy – providing free train tickets for cancer patients and caregivers, along with virtual consultations, prescription collection, and medicine delivery.

Secondly, there’s government policy advocacy – where the governments of Jharkhand and Rajasthan have recognized cancer as a notifiable disease, leading to proactive and evidence-based policymaking. Economically disadvantaged sections in these states have benefited from cashless treatment due to advocacy efforts.

Next is collaboration with organizations – patient groups have teamed up with organizations to enhance capacity, develop educational programs, and involve patient advocates as family members.

Challenging the outdated notion that healthcare decisions should be solely made by doctors, scientists, or policymakers is another aspect of advocacy.

Then there’s research advocacy – where patients contribute to real-time evidence gathering and identify gaps in research priorities. Patients’ early input in study design has been shown to speed up product launches by up to 2.5 years.

Lastly, there’s industry collaboration – where industry practices increasingly integrate patient feedback during drug development, trial protocols, and implementation plans.

So, for that reason, nurses, doctors, and everyone need to come together because each person has unique skills. So, we must create a supportive environment for everyone. This can only happen if we cooperate and work as a team. We’ll adjust our priorities to align with each other’s needs. By setting aside our egos, we can unite to advocate for others. And today, you can witness real-life examples of this happening.

Ten years ago, those who discussed creating such medicines participated in clinical trials. And those medicines were indeed developed today. This created numerous opportunities for people. Pharmaceutical companies swiftly launched these medicines within 2-3 years. This demonstrates the impact of advocacy and collaboration in our country.

Previously, the main focus was on treatment, but now it’s also about providing care. Advocacy is advancing with the assistance of others. So, what should we do now? Firstly, we’ve all gathered here and continued our discussions with stakeholders.

Secondly, we collaborate and work together. Everyone has different strengths, but together we can accomplish much and save lives. Additionally, there are various advocacy partners where I can enhance my abilities by learning from others and sharing my own experiences. Lastly, there’s cancer care advocacy, where we must prioritize caring for patients mentally and emotionally, alongside treatment.

Therefore, I believe you’ll gain valuable insights today on our cancer conclave program. We’ve brought many cancer experts, so stay connected with us.

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