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Interview

Linamara Rizzo Battistella: In defense of movement

The physician who helped establish Brazil's policy on the rights of people with disabilities now fights to rehabilitate Covid-19 patients

Leo Ramos Chaves

Young Linamara Rizzo’s (the “Battistella” came with marriage) first brush with the world of physical disabilities occurred when she was six years old. In 1957, she was a child actress and—for a television show—wore the braces normally used by children with polio. Afterwards, while removing the devices in the dressing room, the program’s host, Hebe Camargo (1929–2012), discovered that the little girl didn’t actually need to wear them and was so relieved she burst into tears. The young actress didn’t understand why it had frightened the adults so much.

After completing her medical education, Battistella helped develop Brazil’s national policy on rehabilitation for people with disabilities, and for almost 11 years, from 2008 to 2018, she was São Paulo’s secretary of state for the sector. During this period, she helped to create the Lucy Montoro Rehabilitation Network, which became one of the country’s principal institutions for the treatment of people with physical disabilities that result from sensory, cognitive, or motor impairment.

She has always engaged in developing and managing public policy without losing her enthusiasm for teaching and research. Since the beginning of the pandemic Batistella has dedicated herself to the search for the best methods of rehabilitation for people impacted by Covid-19. In the long term, she plans to develop robotic exoskeletons to help spinal cord injury and stroke patients get back on their feet.

The only Brazilian member of the National Academy of Medicine in the United States, Batistella is married, with three children and three grandchildren. She gave this interview through an internet video platform.

Age 69
Field of expertise
Physical medicine and rehabilitation (physiatrics)
Institution
University of São Paulo (USP)
Educational background
Degree in Medicine from the Pontifical Catholic University of São Paulo (1974), PhD from USP (1990)
Published works
284 articles and 20 books (coauthor or editor)

How has the pandemic changed your life?
Everyone is suffering. I love my family, but we have to keep our distance. This health tragedy has exposed our weaknesses, but it’s also opened up opportunities. Today I talk to my research partners in the United States and England with an ease that I didn’t have before; I don’t know why. The communication platforms were there, but it was difficult to find the time. We’re trained to have an answer for everything, but I suddenly saw that my colleagues were scared; I was terrified. But we’ve learned to understand our patients’ pain from afar, through the internet. I’ve found that this format allows us to bring the patient’s son or daughter into the treatment, which had often been the family’s wish, but the opportunity had been lacking.

What are the challenges of rehabilitating people who’ve had Covid-19?
When the pandemic started, the first thing we did—in a project supported by FAPESP—was to look for possibilities for expanding medical care. In late February 2020, one of the discussions at the congress of the International Society of Physical and Rehabilitation Medicine in Atlanta, in the United States, was precisely the challenge of respiratory epidemics. It was clear that the situation could get worse, based on reports from colleagues in China who were already confronting Covid-19. In March, when cases began to multiply in Brazil, the effects of Covid-19 were already a bit better known. We began to see what would need to be done to meet this new demand at the basic, intermediate, and high-complexity care facilities. We expanded the patient attendance models, so that no one would be left out. As of today [early April 2021], we at the HC [Hospital das Clínicas of the USP school of medicine] have attended 4,000 patients, with around 3,000 survivors, and we’re still following up with 823 patients after discharge. Of this total, 60% had comorbidities such as hypertension, diabetes, and obesity, but comorbidities alone do not explain all the long-term sequelae. The vast majority of patients who left hospitals alive are not yet able to return to their former activities. Rehabilitation is critical because the effects of Covid-19 are devastating.

What effects have you observed?
In addition to the already known symptoms, such as loss of smell and taste, we’ve frequently observed intense fatigue, headaches, joint pain, insomnia, depression, and difficulty with swallowing, communication, and movement. With ultrasound, we saw major changes in the structure of muscles in the legs and arms. It’s a severe form of sarcopenia [muscle loss due to age, disease, or long periods of immobilization] like we’ve never seen before.

Is this condition reversible?
I hope so. Rehabilitation helps a lot. In February this year we published an innovative approach in the journal Clinics, associating the use of medication with robotic exercises, high frequency ultrasound, and FES—functional electrical stimulation—which we use in a completely new way and which makes the stimulus quite tolerable for the patient. In our rehabilitation hospitals we achieved a good recovery in three to four weeks, which is a great result for people who were hospitalized for three to five months in intensive care units. Exercise has a direct impact on neural control and on reducing anxiety and depression.

How do you follow up with patients?
The HC created an integrated, multidisciplinary assessment of post-Covid patients, with teams from cardiology, pulmonology, endocrinology, pediatrics, otolaryngology, psychiatry, and our team, from rehabilitation. During a single visit the patient sees several specialists, with breaks so they won’t get tired, and a standardized system for recording information. We already know that people who’ve had Covid-19 really need rehabilitation. They are very alarmed; and scared.

In public administration, at times it’s better to wait and structure a program that has more substance. Small attempts won’t survive

What are they afraid of?
At first, it’s about having Covid-19. Then they’re afraid of dying. When they leave the hospital they’re afraid of returning, and having to relive through something that was very difficult. You call and the patient says he’s fine. “But are you walking? Does it still hurt?” “A little bit,” he says. We push on: “Are you able to eat well?” “No, I still prefer eating soup.” When we say that he needs to come to the hospital, he asks: “But I’m not going to be admitted, am I?” It’s a fear of the future, of illness, of the unknown. The psychiatry team has been working brilliantly on this, which includes using an app developed at HC that’s provided really good support for guiding patients through self-treatment at home.

Can Covid-19 be seen as a chronic disease?
Today it’s being classified as a chronic disease, what’s called “long Covid.” The long-term duration of symptoms affects a subgroup of patients, who will require attention and care for an extended period. That’s what scares us: how is our healthcare system going to handle it? If we’re not able to handle it now, what will it be like in four or five years?

How do you tell a person who’s had a stroke or spinal cord injury that despite their best efforts they won’t be able to recover all their usual movement?
That’s my deepest concern. Who am I to say to a patient: “You’re all done, it’s no use anymore.” And there’s another side: who are we, as a health system, to keep putting resources into a treatment that’s not working? I have two patients dealing with the same type of stroke, but one of them responds to a treatment and the other doesn’t. In the latter case, is it because he’s hit a functional limitation or because it isn’t the right treatment for him? In a research project with colleagues from Harvard University [United States], with funding from FAPESP, we’re studying biomarkers to find answers to these questions.

What are the limits of rehabilitation?
It all depends on neuroplasticity [the nervous system’s ability to readjust to new conditions]. Each patient’s previous history impinges on the possibility of functional recovery. Early treatment is another important variable. One of our research goals is to identify the best stimulus and the best intensity level capable of actually impacting the central nervous system without causing fatigue. As part of public policy in this area, we provide stimulus for accessible gyms and guidance for the major sports centers in the city, but there’s still a long way to go.

How is your research going?
We have a Research Support Center that brings together medicine and engineering from São Carlos and Poli [Polytechnic School], which are both part of USP. We’re searching for materials and automation systems that will open new possibilities for exoskeletons. Today, exoskeletons work like armor and function for training patients in rehabilitation centers, but we need to create a system that’s friendlier and easier to use outside of rehabilitation centers—something that can be used to stand upright and help cover short distances. One study sponsored by FAPESP, coordinated by Arturo Forner Cordero from Poli, and Adriano Siqueira, from the São Carlos School of Engineering, is aimed at expanding the possibilities for the use and functionality of exoskeletons in the rehabilitation process [see Pesquisa FAPESP issue nº 301]. Adriano had the idea of developing a half-exoskeleton to train hemiplegics, people who’ve had a stroke. The prototype is ready for the clinical testing phase. We need to involve materials engineering, because what’s currently out there doesn’t meet our needs. Nobody is going to walk with 26 kilos on their back. Arturo’s study, along these same lines, is going well and should be ready by the end of the year; it also received funding from CNPq [the National Council for Scientific and Technological Development]. Now it’s time to talk to Brazilian industry about the possibilities of producing these new devices.

Alexandre Moreira /A2 Photography / Wikimedia Commons At the Lucy Montoro Network’s São José dos Campos unit, robotics devices and virtual reality equipment help with movement recoveryAlexandre Moreira /A2 Photography / Wikimedia Commons

What was it like to work at the secretariat?
I first had to wrangle with the name, which initially was the State Secretariat for Assistance to People with Disabilities. I said: “That name? Never.” I said I’d only accept if the name was the State Secretariat for the Rights of Persons with Disabilities, because it is not about assisting, but about guaranteeing rights. [Then governor] José Serra insisted on the appointment and said that he needed someone thinking about this, 24 hours a day. I held my ground, thinking he would give up, but he didn’t. It was up to [then state representative and recently deceased mayor of São Paulo] Bruno Covas [1980–2021], who got the secretariat approved under that name in the Legislative Assembly. In 10 years and 9 months at the secretariat, I was there through three federal administrations and five governors. This experience opened up my vision of public policy management and demonstrated other ways to broaden the paths of inclusion for people with disabilities.

What did you learn?
I learned that sometimes it’s better to wait for the next opportunity and structure a program that has more substance. Something less, a small attempt, won’t survive. It’s better to have one or two or three large projects to structure, and always in related areas. If we’re talking about healthcare, well then let’s talk to the Department of Health. I was in the secretariat during the era of the Olympics, when Brazilian Paralympics were at their zenith, there were resources and [then Sports Minister] Aldo Rabelo came to me and said, “Let’s build a Paralympic training center.” We called the Department of Sports and created an unbelievable Paralympic training center, a village with the capacity to house 150 athletes, with a certified athletics track and six Olympic swimming pools. And to make libraries accessible, we spoke with the Department of Education. We talked to the interested sectors not so they would contribute resources, but to show that it wasn’t one isolated program. There isn’t one world for people and one world for people with disabilities; it’s the same world, and when you live with a disability you move between both of these worlds. I was constantly asked if the issue of disabilities shouldn’t rather be dealt with at the Department of Health, and I said no. “They are people; the disability comes afterward. What do people need? They need education, culture, sports… Ah, they need healthcare too, sure. They will do everything we do, just in a different way.” It was a golden age; we created awards for the best companies for workers with disabilities. In my last year, in 2018, we delivered the award at the UN [United Nations] headquarters in New York, it was the first global version.

As a manager, what were the biggest lessons you learned?
The first was that our regulatory agencies have a great appreciation for the process and little for the result. The second was that the procedures are highly varied, it’s different from what you see in healthcare and sports, in terms of making decisions. Another thing: anything that strays outside the comfort zone causes a lot of controversy. To do anything new, you’re constantly explaining and defending yourself. Luckily, we had a very active and available State Attorney General’s Office. I didn’t do anything without talking to them first to get an understanding of what I could and couldn’t do. Colleagues from USP and from the Palácio dos Bandeirantes [seat of state government] were also tireless partners.

How did the creation of the Lucy Montoro Rehabilitation Network come about?
We already had an HC Rehabilitation Center in the São Paulo neighborhood of Vila Mariana, built on land donated by the Klabin family [owner of one of the largest paper and pulp mills in the country]. The metro [subway system] was already running at Avenida Paulista and it wouldn’t take long to get to Vila Mariana. But when I started directing the center in late 1979, the engineer responsible for information technology at InCor [The Heart Institute at USP], Cândido Pinto de Melo, a paraplegic and disabilities rights activist, called and asked me, “How are the patients going to get to the rehabilitation center?” I thought that my responsibility began at the door, but he showed me that no, I needed to be attentive to every necessity, in addition to healthcare. In this sense, the elimination of barriers to transportation was essential. Some metro stations were already operating, with no elevators in sight. One day we lined up all the wheelchairs in the middle of the station: “No one gets by, neither us nor you.” Nobody asked us to move. After we did this four or five times, the Metrô people decided to talk with us and the accessibility issue was resolved.

Was the HC Rehabilitation Center the origin of the network?
Yes. Expanding the rehabilitation center hadn’t crossed my mind. But one day, in 2008, Governor Serra said: “I want to create a rehabilitation network, following the model of Hospital das Clínicas. How many units do you think works, using the center as a model?” I said, “Three, around the state of São Paulo.” He replied, “What do you mean? No, I want ten!” Aloysio Nunes—the then Chief of Staff—and I started looking at various regions to find partners in places where there would be human resources, to ensure we could build teams. We had three units in São Paulo and then expanded to five. We have two institutes in the city of São Paulo, the HC Physical Medicine and Rehabilitation Institute and the Morumbi Rehabilitation Institute. All the units were designed with the same reasoning and philosophy, multidisciplinary teams, and state-of-the-art technological support. For this project, in addition to the five Lucy Montoro Network units managed by HC-USP in the city of São Paulo, others were created in Campinas, Ribeirão Preto, São José do Rio Preto, São José dos Campos, Mogi Mirim, Fernandópolis, Presidente Prudente, Pariquera-Açu, Botucatu, Sorocaba, and Santos. They all have the same features in terms of architecture, environment, human resources, and technologies.

At school, we learn the value of inclusion in a natural way. If we separate students, we lose the essence of inclusion

At the age of six, you starred in a network television show called Um lírio na TV [A lily on TV]. How did that come about?
On a holiday around All Souls’ Day in 1957, my ever-enthusiastic aunt, a teacher, said to her nieces and nephews: “Let’s go to a TV studio so you can see what it’s like.” I was about to turn six years old. She thought we would get there, someone would open the door, and we’d go inside. We arrived at the Victor Costa Organization [purchased in the 1960s by Roberto Marinho, who turned it into Rede Globo] and the doorman asked: “Did you come for the audition?” They were selecting kids for children’s soap operas and my aunt—so we could get in—said yes! The test was simple: read and interpret a text, with experts evaluating you. Afterwards we traveled to Cruzeiro, a city in the interior of São Paulo, because it was my grandmother’s birthday. It was very rare to own a television in 1957. When we got back home the neighbors said that they’d seen my name on TV. My father was livid because he didn’t even know we’d gone to the studio. The producer, Libero Miguel [1932–1989] and his wife Enia Petri came to our house to talk to my father, who was adamant. “Imagine, my daughter an actress!” It was my grandfather who convinced him, saying, “It’s good experience for the girl, let her go.” While preparations for the soap opera were underway, the TV studio produced a program called Um lírio na TV [A lily on TV].

What was the program about?
Brazil was at the end of a major polio epidemic and disability organizations and rehabilitation centers were just emerging. This coincided with the founding of the Rehabilitation Institute at HC, and the creation of the AACD [Association for Assistance to Disabled Children]. There were already a few associations for children with intellectual disabilities. On the program, which was a call for donations for the rehabilitation of people with disabilities, I wore braces for children who’d had polio, but it was fake. After the program, the presenter Hebe Camargo—who was already well-known at the time—entered the dressing room, saw me removing the braces and asked, “But don’t you need these to walk?” I said no and she was so relieved she burst into tears. Since I was only six years old, walking around with the braces was a fun thing; I didn’t understand why it scared people so much. I worked for several years in television and participated, as a child star, in a few programs—Almoço com as estrelas [Lunch with the stars]—and made soap operas and programs on other networks, such as O sino de ouro [The golden bell] on TV Cultura, in a series called Ouro para o bem do Brasil [Gold for the good of Brazil].

Why didn’t you pursue an acting career?
Director Sérgio Cardoso [1925–1972] asked me to come act in the theater when I was 16 years old. The play would have been Jornada comum [Ordinary journey]. I looked at the script, but my heart was no longer in it. I wanted to go into medicine. For a year I studied really, really hard. At the age of 17 I began medical school at PUC [Pontifical Catholic University, Sorocaba campus] and I really liked it, the course valued humanism in healthcare. It’s a school where science is done in favor of the patient, not just in favor of the health system. I did theater in college; it was more fun.

You participated in the development of the 2002 Ministry of Health ordinance that instituted the National Health Policy for Persons with Disabilities. How did that process work?
In the early 1990s there had been a big struggle to define the National Health Policy for People with Disabilities. Because I ran the HC rehabilitation center, from 1995 onwards I participated in meetings for developing the SUS [Brazilian Unified Health System] procedures chart. Until that time, wheelchairs could only be obtained through donations. The Ministry of Health created a working group in 1996, and later approved the first list of orthosis and prosthesis procedures and mobility aids in 1999.  We went to the ministry—Arlete Salimeni, as a social worker, Vera Lúcia Rodrigues Alves, as a psychologist, and I, as a physician—all of us voluntarily, to discuss the patient attendance models with the relevant technicians. With Serra, who was then Minister of Health, we established the National Health Policy for Persons with Disabilities. When the document reached the National Health Council, we thought there would be difficulties, but Zilda Arns [pediatrician and aid worker, 1934–2010] was there, and gave us her full support. The National Policy was signed in 2002, after four years of procedural activity.

According to the 2010 Census, 25% of the Brazilian population, currently estimated at 52 million people, have some type of disability. What assessment would you give to the support and treatment they receive?
We’re halfway there. Brazil offers a limited type of support—I won’t say 100% adequate—on educational issues. Both the municipality and the state of São Paulo are good examples of how education can be truly inclusive. Teachers, in general, are prepared to receive students with disabilities. The healthcare sector is increasingly welcoming to these people and understanding of the extent of everyone’s rights. We’ve made great strides in access to culture, which always provides an exciting experience. In England, inclusion is manifest in the lives of families and people with impressive ease. When we are together at school, in the park, at the movies, the hospital and in other public spaces, we learn the value of inclusion in a natural way. When we separate people and projects, we lose sight of the essence of inclusion, and it’s possible that some rights could also be lost.

We’re not just talking about the problems of other people, because at some point, all of us may experience some kind of limitation

Is prejudice against people with disabilities increasing or decreasing?
Prejudice increases every time a person in a vulnerable situation is put in the position of fighting for their rights to full inclusion. Prejudice is also a reaction to the “I want to participate” movement. How’s it done on Facebook? Remove the undesirable individual and keep the conversation going among equals. I’m not on Facebook, but I hear my grandchildren talking, and I recommend they listen to conflicting opinions. We cannot create a society where we see only what’s in the mirror.

How should we accept people who are different?
There are two movements. One is societal, through legislation, schools, and communication. It has improved a lot, but of course change isn’t equal in every place at all times, because society was built in a sectarian manner. The schools help a lot, because children are good-natured, friendly, and welcoming. The other movement is based on the individual, who must be empowered to fight for his or her rights. The family must not be the first obstacle. At any level of society, a mother of a baby with a disability needs to be received warmly from the very beginning. Do you know what it’s like to pick up a family album, turn the pages, and not find one picture of their child with a disability? That story of the doctor putting a hand on a mother’s shoulder and saying: “From now on…” is it a diagnosis or a sentence? This is an enduring concern in our discipline, so we’re continually improving our preparation of students and healthcare teams. My first-year students go to the rehabilitation ward to interview patients with limitations due to illness or accidents, and they come back excited, full of ideas. We’re not just talking about the problems of other people, because at some point all of us, like now, during the pandemic, may experience some limitation.

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