Vanessa Carter: 3 years of surviving a drug-resistant infection made me want to create change

2021-04-27

Your life can change in a split second. Vanessa Carter from South Africa is well aware of this. She was in a car accident 17 years ago.

She says: "I pushed a lot of feelings down but it was extremely, extremely difficult. Especially the facial difference, the trauma of losing half your face to an accident. People stared at me and I had the most horrific comments sometimes."

On top of the accident she also survived 3 years of a drug-resistant infection. Despite this, she stayed strong and felt a need to create change. She became a patient advocate for antibiotic resistance and is now widely engaged, completed a Stanford Medicine X e-Patient Scholarship and holds a position in the WHO Strategic Advisory Group (STAG) for AMR. She says: "It is not just me, there are other patients as well."

For how long have you worked with antibiotic resistance?

– I started advocating for antibiotic resistance in 2013. Prior to that, for about three years, between 2010 and 2013, I overcame a multi-drug resistant infection. The infection was on my face after ongoing reconstructive surgeries, this because of a car accident that I had in 2004. So, I have been working with antibiotic resistance for a total of 11 years, that is eight years of advocacy and three years of surviving a Methicillin-resistant Staphylococcus aureus (MRSA) Infection.

Would you like to tell us little about your accident? What happened?

– A car overtook us on the wrong side of the road and we lost control and went into a violent spin and hit a concrete wall. I was wearing my seat belt at the time, but I was sitting forward because I was reading a magazine, to make things worse, the car did not have airbags. So I got locked into that position, and hit a hard dashboard at an enormous speed. The seatbelt did a lot of damage too. I had to have an emergency laparotomy surgery because of all the internal bleeding as well as resuscitated on the scene. As a public patient, I was taken to the Charlotte Maxeke Johannesburg Academic Hospital where I was intubated on a ventilator for a couple of weeks. Eventually, I was discharged after many painful surgeries.

– I had broken many bones in my face, I broke my jaw, my nose, a lot of the cheekbones and had what is called an orbital blowout to the eye bones and also lost my right eye which had to be removed. It took me about a year after being discharged to really get over the pain in my body and very painful headaches. I had to get used to driving again too, because I now had only one eye and so partially blind. Plus, I had broken my pelvic bones so I couldn’t walk either for an extensive period.

What happened next?

– A year later, I was in a position to start looking at what types of surgeries I needed. I visited different doctors who explained  that I needed to do various procedures to rebuild my face so it looked normal again using techniques like plastic surgery as well as internal prosthetics and external such as an artificial eye. These prosthetics would get my face right again, as there was a lack of bone in my face.

– Six years after my accident, I was ready to work on the fourth prosthetic which was to rebuild the cheek area and create an better illusion of symmetry. After this surgery, I needed a plastic surgery touch up because my surgical scars were bonding to the prosthetic. Two weeks after that, I felt moisture on my cheek and went to the hospital where it was established that I developed an infection which required debridement surgery.Unfortunately, the infection kept coming back over and over again for about 11 months, this in between 4-5 surgeries. I ended up seeing a mix of super specialists to help manage it including a plastic surgeon, maxillofacial surgeon, ophthalmologist, ocularist, and ENT surgeon who would all give me different opinions of how to manage it and at the same time prescribe antibiotics between surgeries, as well as during.

What were your feelings at this time?

– I pushed a lot of feelings down but it was extremely, extremely difficult. Especially the facial difference, the trauma of losing half your face to an accident. People stared at me and I had the most horrific comments sometimes.

– Going to fetch my son from school for example was hard for him because the other kids would say, “what’s wrong with your mom’s face?” It took a lot of energy and willpower to finish the reconstructions. I think having my kids helped me to stay focused because you can not just give up hope as a mother – you must carry on.

Approximately how many courses of antibiotics were you given during your treatment?

– I have absolutely no idea, I wish I did. One maxillofacial surgeon prescribed a 14 day course of Augmentin more than once.

– During the 11 months of ongoing reinfection, I was getting antibiotics all the time and I didn’t know anything about antibiotic resistance back then. During my final month of surgeries to salvage the prosthetic, it was removed and taken away for testing. I requested to see a copy of the test and at the top it said Methicillin-Resistant Staphylococcus Aureus (MRSA) and it gave a list of all the different types of antibiotic drugs that I was now resistant to, for example Tetracycline and Cephalothin.

What made you engage in antibiotic resistance?

– I asked why nobody that helped me during my surgeries told me about antibiotic resistance. When I started reading about it online, I started to understand how I could have been more aware and taken more responsibility with my antibiotics.

– Since I was unaware, I would for example, take an antibiotic for five days and then I would stop after deciding that the infection was not getting any better. I was not given the right advice in my context, which would have been that you are not supposed to do that, you are supposed to continue and finish the course.

– As a patient, I was totally oblivious to what antibiotic resistance was and I was not able to play my part.

– This is only one reason why I advocate about antibiotic resistance, to empower patients with knowledge. If we are not fulfilling our antibiotic courses, or we are double dosing, we are actually part of the problem. As too when we take antibiotics for the wrong reasons.

What was it like, being a patient and understanding that the medicine you need to get well did not seem to work?

– It was very frightening. Especially the fact that I knew absolutely nothing about antibiotic resistance. I did not know that there were different classes of antibiotics. I did not understand that part, as it was very new to me. If somebody says antibiotics will not be working – what then can we use? What do we do? I felt powerless and like I had nowhere to turn to.

Has the accident changed you?

– The accident happened 17 years ago when I was 25 years old. One thing is the awareness of how one second can change your life. My confidence is a lot less than before for many reasons including because of having to overcome the traumatic experience of not just the accident but also a drug-resistant infection when I believed antibiotics would always work when I needed them and in addition learning to live with the visible scars of a facial difference, especially as a young woman.

How are you feeling today?

– It is difficult to make the comparison. When I was younger, I was definitely more outgoing. Now I am more of a withdrawn and an introverted person. Most of my social circle now has become doctors and patients as some of the friendships I had before the accident changed.

– I know that I have changed a lot and it is a good thing. What I do today as an advocate is driven by purpose and it has moulded a more meaningful existence for me.

Knowing what you know today – can you see that something in context of your accident that could have been handled differently?

– Firstly, navigating the system for patients is very tough. Especially whenever there is a multidisciplinary team involved. (removed text) There are so many different types of specialists out there trying to manage one single patient’s condition and really we need more of a holistic approach, especially for such a complex issue like antibiotic and antimicrobial resistance. To add to navigation issues for example, a plastic surgeon can have sub-specialities like microsurgery or craniofacial surgery to make them right for you especially as a complex patient. That took me a very long time to learn. I wish that I could have just gone to a website and it could all have been explained because it was a lot of homework to try and figure out what I know now. Gaps in care-coordination can also increase the risks of complications, so as patients we need to be able to choose our team members carefully.

– Secondly, access to information. The doctors and pharmacists should have communicated the risk of antibiotic resistance to me, but they didn’t. I also always talk about the packaging of the medicine, the actual pharmaceutical packaging. Why aren’t the risks of developing antibiotic resistance not very boldly advertised, like it is on the cigarette boxes that you can get cancer? There should be a law about pharmaceutical packaging being an important communication point to educate patients about the risk of antibiotic resistance. I never saw it.

– Thirdly, I would have liked to have a record of the antibiotics I was taking. So essentially, tracking the antibiotics. If I had not asked to see the test, I would still not know what MRSA is. Still to this day I have to volunteer that information to my healthcare providers.

What actors do you think could help create change around the issue?

– Number one, policymakers because so much has to change. If you look at it from a One Health perspective, when I am not a patient, I am a consumer and I am at risk of antibiotic resistance in different ways. So for example: food packaging – by law there should be certain things that should be written on food products so that consumers are aware of the type of antibiotics that are going into their or for that sake, their child’s body.

– Other actors include health care workers such as pharmacists and nurses. They need to be able to have conversations with their patients about antibiotic resistance. In my case, there were pharmacists who could not answer my questions when I was taking various antibiotics such as Vancomycin, which are an end of the line type of drug to treat MRSA.

– Lastly, patients are a very large part of the solution. Patients who are empowered and informed about the risks of antibiotic resistance have a better chance of playing an active role in their care, that being said we must also take into consideration that during times when they are incapacitated it may be their family or carers that take on that role. Something such as infection prevention by keeping our hands clean matters to whether or not we develop one or not as well as how far we spread it to others. Adhering carefully to our antibiotics is important too, because if we take them incorrectly, that is we stop the course halfway or double dose, or take them for an infection which may not be caused by a bacteria, we put ourselves at risk of developing resistance. As antibiotics were designed to treat bacterial infections not viral ones for example flu, colds or COVID. As you know COVID is caused by a virus, not a bacteria so antibiotics won’t work unless we get a second infection from bacteria because our immune system is down.

What do you think is the biggest challenge in tackling antibiotic resistance?

– Antibiotic resistance is complex and needs a lot of buy-in from different actors like COVID-19 has. I think COVID-19 has brought so many lessons on issues like vaccine awareness and people’s often fearful reaction to that, especially when they misinformed. We have the same dilemma for antibiotic and antimicrobial resistance if people are not informed. As a patient who knew nothing about drug-resistance when I was experiencing it, I relate to that panic-driven response we have seen now with COVID-19 and behaviors based on a lack of understanding. Effective communication including debunking myths has played a large role in tackling that as it should for antimicrobial and antibiotic resistance going forward.

What do you think is the most effective way to communicate ABR and also to increase awareness?

– A lot of research still has to be done in terms of communication and antibiotic resistance within different countries and populations. The internet is one way to disseminate information and is available in roughly half the world’s countries, mostly developed though but growing in developing nations. It is important that we create patient-friendly resources on the internet to encourage health literacy. Communication should not be too scientific and should be tailored to meet a users needs – such as in a specific language, designed to consider their religious and cultural views, disability, general literacy, education, income and other criteria.

– In some countries where broadband allows it may be better to use videos to explain such a complex issue like AMR/AMS and it does not always have to be doctors that are talking. It could be celebrities, patients sharing patient stories, or others that the community can relate to. Working with charities and community leaders is also a good way to reach the public as they are genuinely more trusted with information than the government. Adding to that, I do think information coming from the government is very important and it shows political support which is still lacking for this topic. Hence, the government could try to team up with these charities and community leaders by providing funding as they mostly have small budgets. Similarly as we saw during COVID-19.

What motivates you and keeps you going? Addressing antibiotic resistance is a complex, long and a slow process.

– Some days…I do not know. I am currently using my skills in communications and some people always ask me how I became an advocate so quickly. Well, I knew how to use social media, I knew how to develop websites and I also knew how to market myself. Many patients don’t.

– I think being in my position, I almost feel like addressing antibiotic resistance is a responsibility for me, because other patients need to come forward. And there are some days where I think to myself, if I quit there is no exact example like me for others. So that motivates me.

– What I do is very tough because I have to keep repeating my story sometimes on the world’s biggest stages. It’s also a healing in a way, knowing that what I went through was for a reason. I have now started working with some organizations where I do get compensated, and that makes a big difference for me because financially I need to sustain this work somehow.

– What keeps me going is knowing that I have come so far and it would be devastating if I did not do it anymore. Everybody has their good and bad days. I am grateful I have managed to reach this point to having my story heard.

What role do you play in your recent appointment to the Strategic Technical Advisory Group (STAG) on AMR?

– I am a patient advocate and basically bring the patient voice to the table.

What are you most proud of in context of your work?

– I am very proud of my STAG appointment because I believe I am the first patient to be appointed to such a high level team and it makes me feel that I have reached the point where I am making a difference with what I have been saying.

– I am also proud of my Stanford e-Patient scholarship that was awarded to me and has opened up a lot of doors. I have actually been to Stanford University three times and that was a huge privilege to be able to do that.

– I am also proud of being a civil society champion at the Africa CDC. Among many other things, I am honored to have opportunities opening up to me to work with different organizations. Also recently sharing my story at the UN High-Level meeting with four other advocates from around the world.

Is there something particular that you hope to accomplish in the future?

– I have always said that there should be some sort of a non-profit organization that focuses specifically on patients for antibiotic resistance, perhaps with patients as prominent board members or trustees. One day, I guess as awareness improves and more voices emerge we will eventually see those sort of groups established.