A new survey out by lupus drug maker GSK has found that nearly half of surveyed healthcare professionals believe patients with lupus have not been getting “optimal care” over the past two years, with COVID-19 and doctors not talking about organ damage at diagnosis with their patients the key factors.
The survey, conducted by Material for GSK this summer among 648 healthcare professionals (HCPs) across seven countries, specifically found that 44% of the HCPs asked saw the pandemic and other factors as preventing some people living with systemic lupus erythematosus (SLE) “from getting optimal care in the past two years,” something which can up their risk for organ damage.
There are several types of lupus, with SLE the most common. The condition is caused by an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage.
Organ damage can occur in up to 48% of people living with lupus, most within five years of diagnosis, with lupus flares also upping the risk of organ damage. GSK said some of the surveyed HCPs reported that nearly a quarter (23%) of their patients experienced an increase in flares compared to pre-pandemic, predominantly as a result of lockdowns that stopped people from regularly visiting their doctors’ offices.
And, while surveyed HCPs are familiar with the risk of organ damage and how fast it may occur in lupus patients, they also cited “challenges” in finding which patients are most at risk for organ damage, the report noted.
It found that 79% want more effective ways to measure disease activity, while 4 in 5 (80%) want an easy way to identify which patients are at significant risk for organ damage.
Doctors may, however, be waiting too long to discuss the risks, the survey found. Nearly half of HCPs (46%) said they only discuss the risk of organ damage once patients actually show signs and symptoms of damage, and 65% typically wait more than a year after diagnosis before discussing the potential for organ damage with patients.
That can often be too late. “Some of these findings echo what we know about the experiences of people with lupus and organ damage,” said Mike Donnelly, vice president of communications at the Lupus Foundation of America (secretariat of the World Lupus Federation).
“These important conversations are happening between people with lupus and their doctors, but more action is needed and should be happening at diagnosis if we are going to truly reduce the burden of organ damage on people with lupus and their families.”
There is no cure for lupus, but the condition can be managed with drugs such as GSK’s Benlysta, which has had an FDA approval for SLE since 2011 and more recently in 2020 for active lupus nephritis, an advanced form of SLE that specifically attacks the kidneys. The disease can be tamped down by steroids and other anti-inflammatory meds.
Benlysta made 874 million pounds sterling ($1.01 billion) last year, and GSK would of course want as many eligible patients as possible taking the med, with the survey helping understand some of the gaps in treatment.
GSK had the SLE market to itself for a decade, but last year AstraZeneca’s Saphnelo nabbed a new FDA approval to treat moderate to severe SLE. The U.K. Big Pharma rolled out the first DTC ads for the drug in March.