There is no statistic more uplifting when it comes to cystic fibrosis than this one: In 1962, the average life expectancy of a child with cystic fibrosis was just 10 years old. It’s now predicted that children born with cystic fibrosis in the 2000s can survive well into their 50s. Going back a bit further, children with CF historically died as infants and by the 1980’s the median survival rate was still less than 20 years old.
Today there are CFers living into their 60s with the disease - one of whom, CF ambassador Jerry Cahill, was recently quoted as saying, “Our life with CF is a marathon.” Cahill, now 64 years old, works with the Boomer Esiason Foundation, leading its scholarship and grants division.
A disease that was once shrouded in darkness is now full of uplifting stories of people living long and productive lives. Many are now realizing their dreams of attending college, pursuing careers, getting married, and having children. These are life goals many of us take for granted. However, for those with CF, these pursuits represent accomplishments they only dared to dream about. That they are coming true for so many today is causing positive reverberations throughout the CF community.
Treatment Regimens: Tough But Vital
Treatment adherence when it comes to CF is critical and often times requires a complex daily regimen of inhaled medications, antibiotics and mucolytics that help thin mucus build up and clear the patients airways. Total Care RX works closely with CF patients on strict adherence to these steps, helping them stay organized and committed to their treatments.
A typical CF care regimen can include oral and nebulizer treatments, chest physiotherapy (various airway clearance techniques), time set aside for exercise and adherence to a specific diet, designed around reaching increased fat and calorie recommendations. The time investment for all of this can be well over an hour a day.
As a result of all of the above, adherence percentages for CF treatment plans are low. A recent study conducted by the Division of Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, revealed adherence rates falling short of the recommended frequency in every treatment category studied—from nebulizer treatment, to taking enzymes and aerosolized meds.
“Management of cystic fibrosis can be burdensome and adherence to the daily routine involved in properly caring for CF is tough for some patients,” said James Colligan, Director of Sales & Business Development at Total Care RX. “We work closely with referring physicians and the patients themselves to keep them on a strict adherence plan as it’s vital to living a longer, healthier life with CF.”
Committed to Adherence
Colligan added that a key part of the TCRX’s commitment to improving CF treatment adherence is the close relationships they have built with the cystic fibrosis community. The 2018 announcement that Total Care RX is the official specialty pharmacy of the patient support group Live2Thrive, only adds another layer to that commitment.
With the trend for CF life expectancy clearly on the rise, the effort Total Care RX is putting forth to increase patient treatment adherence is paying dividends.
