Empowering Cancer Advocacy v.2: Dr. Maira Caleffi on Personalized Medicine and Global Impact

For us in Abuja, we have just joined the train and we hope that we will learn from your experiences of all the other cities before us. So you are also the chair of the executive committee of the City Cancer Challenge that is called to Allegra.

How do you use these vast networks to address the challenges that your people are facing and the cancer patients living with cancer in Kotwa and Allegra are facing? Tell us a bit about the City Cancer Challenge and how your city has chosen to implement the initiative.

They are all volunteers with breast cancer or other cancers, but this is not enough to make the government and the regulators to do what they have to do. So I saw, as you know, that I was a board member of UICC in the early days, once back there in 2015, 16, 18. And I was really strong about having more presence in practice in the cities because the patients, the people are in cities.

And I thought this idea of the City Cancer Challenge was amazing. And I wanted to be part of it. And I started a movement with the current at that time, 2018, the mayor and the health secretary, all this together.

And I put the hospitals and the professionals together for once together to bring the idea of the City Cancer Challenge to Porto Alegre. We made a proposal to the mayor. And after that, FEMAMA was the connector.

FEMAMA was the entity that proposed to City Cancer Challenge. So this is a very, very important message to everybody that is listening to us because we need to have a strong advocacy movement in place. But otherwise, to my understanding, every time that they change the government, this can disappear.

And the civil society there involved in the whole process from the beginning can persist and can make them accountable to take the project over from one party to another party. They normally are enemies and they don’t want to bring over what was done before. So that is one of the messages.

And the second message is we need to involve doctors more and more. The medical societies are not there yet. I’m not talking about ASCO that I’m very proud of a member.

I’m not talking about this mega institutions. I’m talking about our countries. We need to bring doctors together.

They are civil society too. Sometimes we say civil society and doctors. No, no, no, no.

We are all together. As individuals, we don’t have cancer. We are potentially going to have.

So we bring them together. And this is what we did with the framework of City Cancer Challenge. And we started to work together on the same table with the mayor, with the health secretary, with the public like managers, private and public medical professionals and the patients.

And that combination of this tripe is very, very, very important and the city can approach. And from that, we started to make plans together. We started to do a needs assessment of the city.

But always one city in a country is not so special. We can take from that what’s going on in the country. That’s good.

What’s going on in the numbers. We started to put everybody together to make them also responsible for the change that is needed. So that was how it happened.

And then three and four years later, we started here in a new NGO to be the implementation and sustainable partner of the CCAM in the city. Totally Brazilian institution called Institute of Governance for Cancer Control. Because we realized that the cancer control needs more governance, needs more who is taking care of all the journey of the patients.

Because, you know, interest is here, interest is there. You know, we’re not talking about innovation, treatment, expensive treatment. We’re talking sometimes about knowledge, about awareness, about important, what I’m going to say now, prevention.

And in Porto Alegre, we started prevention movement for early diagnosis also. Prevent was preventable. Treat early what is possible.

And then control the disease if it is advanced. Almost half of our cancers in BRASC here still are stage three and four.

Very interesting. Yeah. Thank you for that interesting background and the network and how you have been able to pull together the advantages of the CCAM challenge in your city.

And beyond that escalated into having a sustainable structure. Like I mentioned, we have just started our CCAM, the city of Abuja, which happens to be the capital city, was selected as the city. And it’s just now the executives and so on are being formed, the needs assessment, and they’re doing all the mapping to start with.

So it’s interesting to see how the journey will turn out. And like Brazil, Nigeria is also a very high population country. And we hope that we’ll be able to escalate it to the other parts of the country eventually.

I like the idea of having a sustainable vehicle. Now, the IGCC, let me just understand, and this is probably just for me. Is it a national body or a body that is based in Porto Alegre?

So for example, our idea here is to expand pilots that we do here, that is more controllable. Brazil is almost half Africa in size. It’s huge.

And the disparities here are immense. Some people only go by boat to have access to medicine. Some people have floods.

We have all kinds of stuff here. It’s immense. So we need to do pilots and the world for us, implementation is very, very strong because we have to make the laws to be real.

Because the mobilizing society, and when we do FEMAMA, is a very strong advocacy body in Brazil that sits on the table together with the legislators and the big shops. We are really well respected. We were born 18 years ago.

Okay. But doesn’t mean that what we make, that we have lost, that is going to get patients. And that is what we need to do and have IGCC.

IGCC is not an advocacy body. IGCC is an implementation institution that will take good practice around the world, bring back or start new ones, and then make results, indicators. This is governance, isn’t it?

And then it’s, oh, but I don’t know about IGCC. Well, we are early and we are new. And this kind of projects take time because it’s not a one year project as we were normally doing with FEMAMA.

Now, it’s not only putting the sky pink. No, we need to change numbers. Our, how can I say, slogan, it’s not a slogan, but it’s like what we see is like what we’re doing is going to impact patients’ lives.

Let’s leave it. Let’s leave it. Interesting.

You know, you’ve been a board member of the UICC. You spent three years and then you came back to the board. So you have a little idea of the board in the past and the modern day board.

When it comes to research implementation, would you, how would you rate the Union for International Cancer Control and the general reach in Brazil, or should I say more broadly, Latin America, particularly focused on the supports that the organization gives to scientists and members of the academia? I know there are fellowships. Do you feel that the Latin American population are benefiting from being UICC members?

We need more support. We need to help to have to put more subsides, more financial support for UICC to extrapolate a little bit of the English community. For example, more than half of the world doesn’t speak only English.

They speak other languages. And this is still a problem because if you don’t have a proper language, you’re not applying for this and this and that. So our hospital, the hospital that I work for all my life, that I love dearly, that is Hospital Moinhos de Vento in Porto Alegre, became a member.

And for one reason, we are offering fellowships for oncology in Portuguese.

So what’s the point? They need to hear the patients and not only other doctors as teachers. So I think this was a big problem for me because I was so young, early 20s when I went to England and I was not, I am not still a native language speaker.

And I started from zero and they were speaking Cockney, not even English, it was Cockney. I couldn’t understand a word. And I remember going in the evenings, I was already a registrar level, going to classes in the evening to understand the Cockney language because I couldn’t, I couldn’t understand the word, even knowing English.

Otherwise I was not able to be there in the first place. But coming back and I think that these fellowships in the language of where people are going to practice is very, very important. This is something that I count on you as my fellow in the board and the regional approach, we have regional approach for Latin America, but Latin America is so huge.

Yeah, it is. So we have more arms to help the girls that are at the regional committee inside of UICC. I really think that the UICC has, it’s very, very important for me.

I’m a member as FEMAMA, we became a member a long time ago, but I serve as a board, as a volunteer. Because I believe very much in what UICC can do in the world in any part, but we need to make it stronger and stronger every time.

You know that I’m running for the position of president elect. So it’s very useful to hear this kind of inputs in other tasks that is ahead of us this October. Well, thank you so much for your time.

I know you have a clinic to rush to now, and it’s been amazing talking to you. I look forward to seeing you soon in September at the World Cancer Congress. Before I let you go, I want you to just say to us, united against cancer.

And we need to focus on health systems to make it more sustainable for preventive. We need to get people to be more proactive and increase the humanization of medicine, because we are getting shorter and shorter of time, shorter and shorter of money. But there is something that doesn’t cost much to care for patients.

You’re still going to say united against cancer. United against cancer. Fantastic.

Thank you so much. Thank you for your time.