What Patients Need Right Now
By Andrew Stone
Lockdown is a “prison like” experience, for Londoner Annabelle Ume, who suffers from myalgic encephalomyelitis. “It’s very similar to being trapped in a bunker with no access outside,” says Ume.
Many other fellow sufferers are enduring pandemic enforced isolation without much hope. “They are staying in limbo until help is available and adapting to the worsening of their health conditions,” says Ume. “You just try to make mental peace with it because the physical can’t be addressed at this time.”
COPD sufferer John Linnell from Wisconsin is also feeling the strain of ongoing isolation. "Because my lungs are severely compromised by my COPD, it's sometimes difficult for me to breathe freely while wearing a mask", he says. "I sometimes feel that it is difficult to breathe. I do wear a mask when I go out as it helps keep me stay safe, yet I also know that I am simply safer at home."
He adds, "To be honest, since I am high risk, I am simply frightened to go out when I see so many not wearing masks.”
It will come as a surprise to no one to hear such stories. Patients all over the world are hurting right now and must live with great uncertainty about their conditions and access to care in the coming months.
Doctors cancelling appointments, delayed or non-responses to calls and emails as well as the inability to schedule appointments for care is causing stress and anxiety, says Ceciel Rooker, Executive Director of the International Foundation for Gastrointestinal Disorders (IFFGD).
Many of their needs are, unsurprisingly, pressing practical ones. Access to prescriptions and appointments with HCPs is a common concern. Access to information to help understand and manage conditions is another challenge. Even getting hold of non-prescription medicine, such as pain relief, is proving a challenge in some cases.
In many cases, not least in the US, worries about how to pay for healthcare and ongoing expenses in the face of furlough and rising unemployment, further add to the stress of living with a chronic condition.
Falling through the gaps
Mental and physical hardship is common among the patients Reuters Events Pharma spoke to, or the peers they are in touch with. “Lots of those affected by COPD have depression, anxiety and panic attacks,” says Linnell. “They are stuck at home but scared to go out and because you are stuck indoors you are not getting the exercise you need.”
One anonymous patient says anxiety and depression is causing flares: “My digestive issues are seriously exacerbated by full-time anxiety and the poor eating that has become my unfortunate "go-to" for comfort. Two months ago, I would not have believed I could eat this poorly and survive. Every day I break all the "rules" I set up to keep my digestive issues at bay.”
Seb Tucknott, an IBD sufferer and founder of UK-based patient group IBDrelief, fears stress is likely to be a significant factor for many, exacerbating symptoms, quite possibly on a massive scale.
“Stress plays a big role in my disease. If you have a situation where you have a single national global stress event, are you then going to end up with a huge number of patients flaring at the same time? There’s no data yet, but anecdotally I have seen quite a few posts in social media groups that people were starting to flare and I have had people contact me individually about it.”
Despite their symptoms flaring, many will not be seeking help owing to their fear of COVID, he adds. “They will decide they don’t want to put more of a burden on healthcare and so decide to ride this out.”
The need is broad and deep and goes far beyond the severely ill or frail, says Ume. “On the surface it would appear vulnerable people have been cared for but there is a huge group of patients who are not falling into the severely vulnerable group, who have day-to-day health conditions and for whom there is less support and nowhere to go to find out what they can do, apart from online groups.
“There are a lot of conditions where you need medical attention on a regular basis and that can’t all be done virtually. It needs treatments or referrals and a lot of those have been put on hold. There is only so much a doctor can do online."
All the signs are that post lockdown, access to HCPs will be limited for a long time to come as the system clears the backlog. Meanwhile many patients’ conditions will have worsened, says Tucknott. “Any routine stuff has been postponed and it is going to be an issue. Waiting lists were already long. We have lost six months. I should have had an appointment in June but I have not had any correspondence.”
Other challenges are just beginning
How to pay insurance premiums is a huge emerging issue in the US. Furloughed workers, or those who have chosen to take unpaid leave because they are immunocompromised, face some serious problems when it comes to paying their health insurance, says Molly MacDonald, founder of the Pink Fund breast cancer charity.
The time is now up for those who have taken their 90 days paid leave under the Family Medical Leave Act and they must now work out how to optimise their insurance cover, she says.
“You may now be faced with a COBRA premium. If you have a family, that can be couple of thousand dollars a month. I had five children and my deductible was low because I had good employer insurance and the premium was still $1250. I can’t imagine what that would be today.”
Pharma could be looking at ways to work with people in this position to help them to get co-pay assistance, says MacDonald. “Does pharma create a special one-time programme for people affected by COVID?”
It could also continue to support organisations that help patients afford their out-of-pocket costs for prescription medications, like the Patient Access Network (PAN) Foundation, says Macdonald. PAN, in addition to providing financial support for nearly 70 diseases, has created FundFinder, to help patients find financial help for their medications.
Crisis but also opportunity
The temptation for pharma might be to see the issues outlined above as healthcare or access related issues that it can only indirectly influence but the patients and patient groups we spoke to have several ideas that pharma could adopt for their benefit and its own.
It is clear that the crisis has accelerated virtual/digital-led solutions generally and telemedicine in particular. The entire healthcare sector, including pharma, needs to work collaboratively to press home this chance for transformational change.
The crisis has underlined how pharma and the wider healthcare sector needs to get much better at digital communication and at embracing new remote tools, says Tucknott. “They have not necessarily done digital super well. They should be now looking at digital first. We are going to need to move more towards patients not having to go to hospital and instead using remote monitoring, diagnostics and home testing.
“There are huge opportunities. The digital healthcare pathway has accelerated by five years. Patients have been asking for the convenience of remote telemedicine for a long time but there has always been a barrier in the way.
“Then it happened within 48 hours that every outpatient clinic was being done by telephone or video. I believe that will remain the case because doctors realised they can get through more calls and patient satisfaction is higher.
Linnell agrees. “I am a huge believer in technology. The pandemic really has brought telemedicine to the forefront. It has proven to HCPs that it works.”
Joining the dots
He adds that the crisis has also underlined the need for networked technology that captures useful data from multiple sources to further boost the benefits of digital medicine. His inhaler, pulse/oximeter and spirometer, for example, all gather data but separately.
“There is no central way to combine them all,” he says. “In an ideal world, each device would link to a central app with the results sent to the HCP. Then, the doctor or nurse would be able to call me and say ‘come in, we think you are about to have a flare up’ or ‘you need a change in your meds’.”
The telemedicine successes being seen in diabetes is proof that it is possible to advance in other disease areas, says Tucknott. "I get a biomarker once every 12 months. I’d like to know right now where my body is at without having to rely on my intuition. I think wearables, home testing and that whole space is going to grow even more rapidly now.”
Technology could also help HCPs and pharma understand what patients are experiencing in real time, via symptom tracking apps that work much as the virus tracking apps that have emerged during the pandemic, says Ume. “You could track multiple symptoms and make the most pressing needs visible, you’d know what people were lacking the most.”
Pharma can also do much more to play its part in bridging the knowledge gap many patients have experienced during the crisis. Pharma could to do more educational work on Facebook, such as short videos on mask wearing advice for COPD sufferers, says Linnell. “Rather than running commercials on your respiratory inhalers, educate us. COVID is here. I am afraid to leave my house. How can I do it safely?”
Or take treatment information leaflets, says Tucknott. “They could start doing that digitally and in a more engaging way.”
A digital approach would make tailoring information for different demographics possible, he adds. “People engage with different stuff. Everyone is different and this would enable nice clear content to be produced in multiple formats for different people across multiple channels at a fairly low cost.”
A patient-shaped future
Patient engagement should not be a one-way process, however. “It needs to be patient centric and patient led in some way or certainly patient shaped,” says Tucknott.
In fact this is a huge opportunity to use the crisis to transform how patients and pharma collaborate altogether, as partners if pharma is prepared to engage with individuals as expert consultants or consumer reviewers, says MacDonald.
“The patient needs to be considered as a high-level consultant and pharma should establish advisory boards that are diverse and inclusive, that meet monthly and where they invite patients to sit and chat about what’s going on. We need that more than ever now."
There is a lot to learn by listening in this way about how patients live with diseases and treatments. “The bottom line is that pharma needs to see the patient as the expert about the illness,” says MacDonald.
Right now such forums can be convened remotely via Zoom and recruitment can be done via social media. “Start asking questions online, getting feedback and private messaging people to do the interviews,” says MacDonald.
In short, pharma has a golden opportunity to turn crisis and massive patient need into a catalyst for rapid improvement, says Tucknott. “One thing this crisis should do hopefully is make people more open minded and see there are better ways to partner and collaborate. We can all share knowledge.
“In healthcare we’ve experienced fear and anxiety about change in the past but now the barriers are lifting, people are more open minded. Before this, remote clinics were seen as too hard, now we can do that and even build a hospital in a week.
“People now realise stuff can be done and done quickly. It does not matter if it is a bit rough and ready. It’s OK to make mistakes as long as you are learning.”
Hannah Brady, Global Project Director, Reuters Events, firstname.lastname@example.org