Cremona and Milan, Italy – “We can leave the house now, right?” Ermelinda Bonesi, an energetic 72-year-old asks the oncologist and the nurse visiting her apartment in Gussola, a village about 30 minutes from the city of Cremona, in Lombardy, Italy.
Ermelinda has been self-isolating for nearly two months after she – and then her husband – caught the coronavirus. The hope is that today her PCR test will show a negative result and that she will be able to resume her chemotherapy, for the breast cancer she has been battling on and off for 30 years. It is recommended that cancer patients with COVID suspend their chemotherapy treatment as it can increase the risk of severe complications from the virus.
“What really depresses me though, is this virus,” Ermelinda says as nurse Roberta Marchi finishes swabbing her nose.
“Oh I thought that would be your husband,” jokes Margherita Ratti, an oncologist in her mid-30s, finding in the gentle 70-something Saverio Ghizzini the perfect scapegoat to lighten the mood. Saverio’s eyes smile above the protective mask as the women burst into laughter. He stands a few metres away, beyond the large arch dividing the 70s-style, pea-green kitchen from the living room, keeping due social distance from the visitors. As her caregiver, he is the only member of the family she has physically seen in months.
“[It’s been nearly] two months since I stopped my treatment,” Ermelinda explains. “I am perfectly fine, I’ve no symptoms at all. Even with my therapy, I’ve always been well. But this is my third relapse, so I am afraid,” she says, as suspending chemotherapy means giving her cancer an opportunity to grow.
Ermelinda forgets when she last relapsed, but Saverio remembers: it was 2016.
Both agree the last year has been the worst since Ermelinda was diagnosed.
Uncertainty and additional hurdles have been a fixture of everyone’s life everywhere in the world, but for vulnerable cancer patients those feelings, as well as the potential repercussions, are amplified. While accessing hospitals for life-saving treatment became a source of stress and – potentially – contagion, isolation from family and friends further amplified the inevitable feeling of loneliness that accompanies the battle against an illness that others can seldom understand.
Ermelinda sits at the kitchen table where on a disposable cloth nurse Roberta Marchi has set up the equipment for a blood test Ermelinda will need to take before resuming her therapy.
She makes carefully measured movements to take Ermelinda’s blood pressure and other health parameters, trying as much as possible to avoid touching any surface with her body or equipment.
Since the Cremona public hospital – the main hospital in the city of 72,000 people – launched a home assistance unit for cancer patients during the first wave of the pandemic, Roberta has been one of the two nurses tasked with coordinating visits for about 60 patients, organising the schedule according to doctors’ specialisations while doubling up as a driver. The programme gets support from the local cancer care NGO Medea and private funders.
At the end of the visit, they tell Ermelinda that if all tests go well, she should resume her chemotherapy – pills she can take at home – as soon as possible.
The first wave
More than a year after the coronavirus spread across the world, at least 2.6 million people have died of the disease. Italy, which remains one of the worst-affected countries, is emerging from a third wave of the virus and has long passed 100,000 victims.
The country’s public health system has yet to recover from the first wave. In Italy and elsewhere, patients with cancer, cardiovascular or chronic respiratory disease, as well as diabetes have seen their healthcare treatments disrupted or delayed. According to the United Nations, these diseases account for 40 million deaths a year worldwide.
The oncology department of the Cremona public hospital began assisting cancer patients with COVID-19 symptoms in their homes, before extending care to all cancer patients who could continue their therapy at home. As elsewhere in Europe, telemedicine – online or phone consultations – was also introduced. The home care pilot was later extended to two other hospitals in the region.
“Around 40 percent of cancers can now be treated with oral medicines, from hormonal therapy to oral chemotherapy,” Rodolfo Passalacqua, the head of the department, told Al Jazeera. “That way patients in care come to hospital every three months rather than every month, or more often.”
Lombardy, one of Italy’s most populous regions, has also been one of the worst hit in the world and the European epicentre of the pandemic during the first wave. Recognised worldwide for the excellence of its hospitals, its regionally-administered health system has favoured private health providers for more than 25 years. Some less profitable services, including community healthcare, however, remain underfunded.
“The way we have dealt with COVID-19 has shown the failure of the interaction between hospitals and primary care networks,” says Margherita Ratti. “Our idea is this: even after COVID-19, cancer care will increasingly have to move out of hospitals to be closer to the community.”
‘I could not speak at all’
Last October, Rodolfo Palumbo, a 63-year-old Argentinian hotel manager who moved to Milan about 30 years ago, booked a visit with an ear, nose and throat (ENT) specialist after noticing his voice had become lower and more coarse.
He went through a laryngoscopy that showed abnormal tissue enveloping his vocal cords. The doctor recommended the tissue be removed and analysed more closely with a biopsy.
“I got my biopsy appointment within 15 days, but I ended up in a hospital where one of the wings had been converted for COVID patients,” Palumbo recounted in a telephone interview.
“Half an hour before the surgery, I got a call from the head surgeon saying we wouldn’t do the [full] surgery that day, only the biopsy. The surgery would have lasted between an hour and an hour and 40 minutes, and the biopsy only 30,” he said. With key staff and resources – such as anaesthetists – redirected to COVID wards, the hospital had to prioritise urgent procedures, he said.
The biopsy showed a high-grade pre-cancerous lesion rather than cancer, and his surgery was rescheduled for January. By then, however, his condition had worsened.
“I could not speak at all and had a terrible pain in my throat,” said Palumbo. “You know, when you are diagnosed with this sort of thing, anything you feel you think, well, this is it.”
In January, he was diagnosed with throat cancer and went through surgery shortly afterwards. He has been attending speech therapy sessions and monthly checkups, and has slowly regained the use of his voice.
“The biopsy that was negative in November, turned out positive in February,” said Palumbo, “of course [acting earlier] could have saved me the wait, anxiety and the distress of intubation.”
The reorganisation of hospital departments to free resources for coronavirus patients has caused delays for those affected by other diseases. Surgeries and visits classed as non-urgent are routinely postponed. Access to hospital is also made more difficult by compulsory COVID-19 testing and deferrals of therapy or surgery in positive cases.
Before Italy’s vaccination campaign, which prioritised healthcare workers, began in January, high levels of contagion among staff members caused further delays. Staff shortages were already an issue before the pandemic struck due to years of budget cuts – it is estimated that Italy’s public health sector lost about 37 billion euros ($45bn) from 2010 to 2019 in cuts and lost revenue.
Massimo Falconi, a gastroenterologist and head of the Italian Association for the Study of Pancreas (AISP), explained that at the height of the pandemic this was compounded by the demand for hospital beds and resources for COVID-19 patients.
He said the hospital where he leads the pancreatic surgery unit, the San Raffaele in Milan, suffered cuts in the number of surgeries it was able to perform due to the redeployment of hospital staff, particularly anaesthetists, to COVID-19 departments.
“Before the pandemic, we had 10 sessions in the operating room [each week],” Falconi said. “In the worst phase of the pandemic, that became one every week or 10 days. In the second wave, we were able to do seven surgeries a week,” he added, explaining that at the beginning of the third wave, his department had been cut down to three surgeries a week.
With ICU units coming under pressure yet again in March and April this year, hospitals across the country moved to redeploy medical staff and push back all non-urgent hospitalisations and outpatient visits.
‘Those nights were traumatic’
Before getting back in their white mini-van in a parking lot in front of Ermelinda’s home, Margherita and Roberta dispose of their protective gear. Roberta takes an oversized bottle of disinfectant and sprays it all over Margherita and herself.
“Roberta’s disinfectant? It saved us!” Margherita says ironically. “I don’t know how we never caught the virus, we did all sorts of things,” she says as Roberta, a veteran nurse with 30 years of service behind her, takes the driver’s seat.
“I remember I worked my first shift as a permanent staff member in February [last year]. No one even knew what it was, we didn’t have protective equipment, we had nothing,” Margherita, who joined the hospital after a research year abroad, said. During the first phase of the crisis, she explains, she was reassigned from oncology to night shifts in a COVID-19 ward. “I did a lot of admissions without even fully understanding what was going on. People kept arriving, many died and we didn’t even have time to call the family because we had to admit more people. Those nights were traumatic.”
During the first wave, the Cremona hospital was hit by a tsunami of COVID-19 patients and a field hospital had to be set up in its parking lot. While the oncology unit remained open, the dearth of other services turned out to be problematic.
“Sure, you have a bed to hospitalise the patient, but if you don’t have a series of other services that are needed for diagnosis, or in any case there are delays, admitting the patient is no use,” Margherita explains, “there were delays for endoscopic examinations and CT scans.”
Follow-up visits – usually done every six months when the patient’s illness is not considered active – suffered delays too.
“These patients were basically left at home for a long time without being able to do their exams because the radiology department was devoted to COVID-19 patients,” Margherita recounts, adding that new diagnoses were also made more difficult for the same reason. “Many patients have just had their diagnoses delayed, they arrived at our department much later than they normally would.”
A policy challenge
A recent report by the health association Salutequità showed that between January and June 2020 there were about 40 percent fewer hospitalisations than in the same period in 2019, which also saw 13.3 million fewer diagnostic tests and 9.6 million fewer specialist visits.
Despite the additional financial resources pumped into Italy’s public health system in the last year, it was still playing catch up when the third wave hit. The National Screening Observatory recorded more than a million fewer screening invitations for colorectal, breast and cervical cancer in the first nine months of 2020 than in the same period in 2019, a reduction of 40 percent, with peaks of up to 60 percent in some regions. It is estimated this could mean more than 2,700 missed diagnoses just for breast cancer.
About 490 people die of cancer every day in Italy, according to a 2020 report. While the effect of the pandemic on mortality in cancer patients cannot be measured yet, a study commissioned by AIRC, the Italian Cancer Research Association, estimated that screening delays of four to six months for colorectal cancer would lead to it being diagnosed in more advanced stages, while a delay of 12 or more months would affect mortality.
“Beyond a 12-month delay, you have an increase by 12 percent of mortality at five years,” Professor Luigi Ricciardiello, a gastroenterologist at the University of Bologna and author of the research, told Al Jazeera. “This is huge and in my opinion an underestimation because the delays will be far beyond the 12 months that we have envisioned.”
The situation for the Italian public health system was far from good when the pandemic hit. According to a 2019 report, the average waiting time for an oncological visit was 65 days, 97 days for mammography and 75 for a colonoscopy. At least 35.8 percent of Italians were unable to book through the national health system because they found waiting lists were closed.
“The ability of the national health system to care for all conditions and all patients remains a sore point,” Tonino Aceti, the president of Salutequità, told Al Jazeera. “If we don’t turn the situation around, we will get out of the COVID-19 emergency and go into another emergency, that of non-COVID patients neglected in the last year.”
“A plan to recover the time lost should be our great challenge alongside vaccination,” Aceti argued.
Closer to the community
Roberta and Margherita are familiar faces for Anna Maria Cottarelli, who greets them in the morning on the doorstep of her ground-floor apartment in a cobbled street in Cremona’s historic centre.
At 48, she has been battling colorectal cancer for 12 years. During that time, she underwent surgery when the cancer had spread to her lung, and several rounds of chemotherapy. She welcomes them into her living room, surrounded by a constellation of photos of her children, who are nine and 12. She sits on the sofa explaining that the pain in her leg – due to skeletal metastases – has worsened in the last week.
“I’m lucky Robi is coming to take my blood tests,” says Anna Maria, referring to the nurse by her nickname. Her visits to the hospital have been reduced to the bare minimum since she switched to oral therapy. Marchi can monitor her health parameters from home, and book a specialist visit when needed.
“Last March, I was doing intravenous treatment, not oral therapy, so I had to go in [to the] hospital … it was general panic. To do anything, you had to be accompanied, sanified,” says Anna Maria. “The less I see that place [the hospital], the better it is for me,” she concludes. Her aversion to hospitals, Roberta suggests, is perhaps a way to conceal her yearning to be just fine.
“I think she has never come to terms with her illness,” says the nurse, who has known her for years, as they leave the house. She has made arrangements to return to visit her in two weeks’ time. “We hope we can continue to do this [provide this service], even once the pandemic ends.”