Advocating for early detection
Seeing her grandmother suffer in an era when women suffered silently and were stigmatised by cancer drove Zena Bernacca to become a health visitor helping people maintain health in all its facets.
“For three years, she agonised with cervical cancer induced pain before sharing and getting treatment. While the doctors managed to prolong her life, they could not save it. It was a tragedy and became a driving factor,” she shares.
Years later, her mother was diagnosed with breast cancer at 60 years of age after finding the lump through self-examination. “She immediately went to see the doctor and before long, she was in theatre having the lump removed followed by radiotherapy. Mum lived another 33 years before passing on.” Bernacca says, adding that her mother was a very practical and pragmatic woman, qualities she believes she inherited.
However, that was yet to be tested because a day before her mother’s demise, she herself was diagnosed with stage- 0 breast cancer.
“I usually went for health screenings although I it was just a habit. I am thankful for the practice because through a mammogram, I was able to
discover the cancer before it was too late. The doctors advised that if not dealt with, the cancer could mutate into breast cancer,” she shares.
Although this was a difficult time since she was still grieving her mother, with support from health providers, family and friends both here and in the United Kingdom (UK), Bernacca was able to clearly consider the available treatments and within a few weeks, she underwent surgery. Later, she received a clean bill of health.
“It was such a relief that they had managed to get out all the tissue with abnormal cells coupled with a margin of normal tissue. I am cancer free; a good place to be. So, I can say, with confidence that cancer awareness is important and early detection helps to beat it. Coupled with eating well, keeping a healthy weight, and reducing stress factors, many cancers are preventable. I urge women and men to take full advantage of the screenings that are available,” she says.
Born in Kampala to a public health advocate who spent 20 years working in Uganda, Bernacca was always drawn to return even when her family had resettled in the UK. When the opportunity presented itself, she returned as the chief executive director of Hospice Africa Uganda, in 2011, a position she held for three years. Bernacca’s role was to train and prepare the organisation for local leadership, which she achieved.
Starting her career as a nurse, she later moved to preventive health services across the life span but focussing on child development.
“That was before moving into health service management where I developed services in response to HIV in two regions of the UK; managed a small local hospital and community health services.” Bernacca then became co-director of Oasis School of Human Relations (HAU) where she worked for many years developing programmes for individual personal and professional development including diplomas in counselling and in supervision as well as organisational development services; strategic planning, health and well-being series; communications and consultancy.
After HAU, Bernacca established a company; Mabadiliko Change Makers (MCM), that the American Cancer Society (ACS) contracted to deliver their Strengthening Organizations United in the Response to the Cancer Epidemic (SOURCE) programme.
“The programme is designed to strengthen the infrastructure of NGOs mainly in Kampala which have cancer as a major part of their work such as awareness-raising, advocacy, prevention, treatment of cancer as well as offering palliative care, and advocating for policies.”
The work was important because most people
affected by cancer become passionate about doing something to help in the fight, yet had no understanding on how to start or run their organisation. Bernacca and her co-Founder Manjit Kaur, together with a team of Technical Advisors, not only trained, but offered additional support on governance. That included how boards can work effectively through self and peer assessment processes, setting up financial and human resource administration systems and not forgetting how to raise resources plus how to keep in touch with their partners in the community, peer based organizations and health/government agencies in the same fight.
MCM started with 36 organisations; 27 have completed the programme with the first cohort graduating in 2019 and the second in 2020. “It is amazing to see how some organisations which had barely begun, others unregistered are now thriving. With the additional challenges of Covid-19 and the limitations to furthering the work, it has been heart-warming to see how organisations have persevered, adapted their working practices and to reduce costs and ensure more effective and efficient work going forward.”
Joining the fight
One of the advocacy organisations coming out of the ACS efforts is Uganda Cancer Society (UCS). “It not only has passionate but also professional people that
moved UCS from an activity based organisation to being a well-established organisation that has made a mark internationally. They have a strong and ambitious strategic plan, are promoting their member organisations and advocating for a National Cancer Plan, which is now in its consultation phase. UCS also reaches beyond Kampala; helping patients and caretakers better understand the disease with booklets for carers and those with cancer supported by ACS,” she shares
Bernacca notes the need to avail people coming from beyond Kampala with hostels to ease accommodation when they come for treatment. “ACS asked MCM to support patient hostels achieve a common standard of care so patients and Uganda Cancer Institute (UCI) are confident about having a safe and caring place to stay in Kampala. That is besides ensuring that there is a referral process from UCI to the hostels that meet the standards required,” she mentions.
“We are also working with the UCI to set up a patient navigation system so that anyone can be guided smoothly and efficiently so that they see the right people at the right time and get the right investigations and treatment all of which will support the patients improving quality of the experience of getting treatment for cancer.”
Bernacca says it is rewarding to work with various organisations and see them graduate over the last four to five years. These have developed from the involvement of say three people to many more where they have more community outreach and therefore more impact. “Many can now get funding themselves, put it to great use and account for it, report to their donors and even get new ones. Sustainability is our goal.”
It has also been great to see individuals grow into their own roles. From a recent assessment, SOURCE has not only benefitted the organisation, taking it from an idea to a fully functioning organisation, but as a family, we have changed and personally, Bernacca wanted to do a post-graduate course on programme development but could not due to a lack of funds. “However, with the work at hand, I have acquired all the knowledge, skills and been able to put it into practice. I have also met some wonderful people in other organisations broadening our networks which allows for consultation, easier planning and reaching more people together than we ever could alone.”
Bernacca says there is every reason to be hopeful because there are many more NGOs who are able to join forces with private and public organisations to
raise awareness, advocate, and screen as well as treat. “People are also more aware of how to stay healthy even from other non-communicable diseases. They also appreciate early testing and the urgency for early treatment.”
UCI is also a specialised centre in East Africa and they are developing satellite centres, which will help people outside of Kampala to avoid trips. “The National Cancer Plan will make a big difference to funding being available to ensure that there is a reduction in cancer in Uganda. It takes commitment, passion and professionalism, but the vision of many of these organisations is to have a cancer-free society and where we can work together, steps are being taken towards that goal,” she adds.