Living with Lupus: Breaking the Silence
Lupus is an almost invisible disease, yet can have considerable impact on patients' quality of life, but there is much that pharma can do to help
I’ve recently been working on a report analyzing market research conducted with people living with lupus, a condition in which the body’s own immune system attacks and inflames healthy cells, tissue and organs.
The reasons for this autoimmune malfunction remain elusive, although genetic and environmental factors may play a part. Prevalence has been estimated at around 2-140 per 100,000 population worldwide, although it could be as high as 207 per 100,000. Women of childbearing age are around nine times more likely to have lupus than men of equivalent age.
As a mother, I sometimes struggle to deal with the daily demands that parenting can put on me. For people living with lupus, life seems considerably more challenging because the complexity and volatility of the condition make it hard for those people around sufferers to understand what’s going on. It is a disease which is almost invisible and yet has considerable impact on patients’ quality of life.
Lupus symptoms can range from the mild to the life-threatening; joint or muscle pain, fatigue, skin rashes, fever, diarrhea, nausea and depression/anxiety are among the more commonly reported. At worst, lupus can lead to potentially fatal complications, such as kidney failure, cardiovascular disease or stroke. What’s more, the classic symptoms of lupus overlap with those of other diseases, while the number and type of symptoms vary from one person to the next, making diagnosis problematic. It may take years before lupus is even recognized, especially as symptoms come and go in a pattern of flare and remission.
Feeling up and down
Not knowing when and how lupus may flare up wreaks havoc in the lives of people with enough to worry about already. For our report, ‘Living with Lupus’, research was conducted amongst patients in the US and Europe. One participant described the condition as: “Up and down all the time. If I push it one day, I will pay for it the next.”
People with lupus generally place high expectations on themselves and feel guilty when they cannot meet the demands of daily life. The population for the disease is predominantly female, and most of these women (87%) have children. With an average age of 44, those with the condition are generally in an active stage of life. Among those who work, people with lupus take an average of five days off per month due to the condition, while our research showed that 15 percent cannot work at all because of their lupus.
Breaking the vicious circle
It is not just the sudden onset of multiple symptoms that disrupts the lives of people with lupus. The stress and anxiety of knowing those symptoms are just around the corner are themselves triggers for flares. When asked the cause of their flares, 72 percent blamed stress/anxiety, far more than for infections and viruses, or sunlight.
At the same time, fear of flares and the viruses that trigger them were the most cited causes of stress/anxiety. Our interviewees experienced flares on a regular basis – almost half stated they happened weekly. While over a half of people reported feeling stress/anxiety weekly, just over a quarter reported it daily.
Avoiding the vicious circle of ‘stress that causes flare-ups and flare-ups that cause stress’ is a key concern. In our poll, 82 percent strongly agreed that their coping strategy for lupus revolves around staying healthy, such as getting enough rest or sleep and taking gentle exercise. One participant commented: “I want to work when I feel well, but if I try and do too much, it can have a negative effect.”
This constant struggle to stay on top of lupus is not helped by its low visibility and unpredictability. “When people see me, they see a normal person,” one respondent commented. “I don’t look sick, and when I say I cannot go to a certain event and I feel tired, they wonder why I am tired.”
Help us be normal
What can pharma do to help improve the lives of people living with lupus? Not surprisingly, people with the disease want to live as normal and stable a life as possible. They are interested in the option of less frequently administered drugs, longer-lasting relief from symptoms and, specifically, better relief of fatigue and joint/muscle pain.
The vast majority of patients are on immunosuppressants, a third of patients are given steroids and 18 percent are on a biologic treatment. Many patients are also given some form of pain relief. It can be difficult for people with lupus to separate symptoms of the disease with the side effects from their medication.
One of the findings from this study that stood out for me is the number of people who feel unsupported by their doctor. A sizeable number said they wanted greater support from their physician, particularly US patients. Pharmaceutical companies with treatments for lupus should consider finding ways to help doctors give greater support to their patients, through patient support programs, education and referral programs that give patients the right support at the right time, when they need it the most.
For ‘around-the-pill’ initiatives, support groups could be an invaluable resource in normalizing lupus, especially with the many opportunities afforded by social networking. In our survey, two-fifths of respondents belonged to a support group, much higher than in other chronic diseases.
As most people with lupus are still relatively young, they have grown up in the internet age, with the associated knowledge and confidence to interrogate information sources outside the traditional doctor-patient relationship. These channels could provide not only a platform to share advice and experiences but the visibility and validation that people with lupus so clearly lack in their daily lives.
About Living with
The Research Partnership’s Living With reports are based on research with large numbers of patients across different markets, help pharma to get a more in-depth understanding of patient needs, so that they can identify ways of better supporting them.
Mariel Metcalfe is Head of Living With at the Research Partnership