There’s a recent research paper from the Archives of Ophthalmology on the health care costs of retinitis pigmentosa (RP) that’s spurred lots of discussion around the FFB office. Led by Dr. Kevin Frick, of the Johns Hopkins Bloomberg School of Public Health in Baltimore, the study compared the annual health care costs of nearly 3,000 people with RP to 3,000 people without. The bottom line: People with RP had $7,317 more in annual health care expenditures.
To me, that’s a significant number, especially if you extrapolate it over a lifetime (70+ years), when the cumulative cost approaches $500,000.
Interestingly, the largest portion of that $7,317, about 70 percent, was for additional outpatient services (physician and clinic visits, testing and exams, etc.). People with RP had 2.74 more outpatient visits per year than those without. While the paper didn’t specify which specialists or services accounted for the difference, many were likely for vision-related issues.
Not only is RP cause enough to see the eye doctor more frequently, but people with RP are at about three times greater risk for cataract and ocular inflammation and infection. They’re also at two times the risk for glaucoma and for ear and sensory organ disorders, which the researchers believe is often attributable to Usher syndrome (combined RP and hearing loss).
Keep in mind: This paper did not include costs for low vision resources (guide dog, cane, computer software, etc.), care giving, special education needs or any type of low vision training or rehabilitation.
So by now, you are probably saying, “Thanks, Dr. Rose, for all the good news. As if losing my vision wasn’t bad enough!”
But I think there is a silver lining to this report: If you take care of yourself, you can minimize the additional health care costs. Whether you have diabetes, heart disease, asthma, RP or any other chronic condition, practicing wellness is critical. It is a lot cheaper to take care of yourself and prevent complications than it is to just let yourself go until a problem becomes acute.
Perhaps most important, if you have RP or any other retinal degenerative disease, is to see a retinal specialist regularly to help preserve your vision as much as possible. The doctor may not have the cure just yet — we are working on that as hard as we can — but he or she can detect and treat something like glaucoma or inflammation before you do, preventing further vision loss and expense. And always get to the doctor immediately if your vision changes suddenly. Sudden vision loss is not normal with RP; it is a sign of a related complication that may be treatable.
Also, to protect your vision, make sure you wear sunglasses in bright outdoor light, and don’t smoke.
My final words of advice: Enjoy yourself. As a recent article on the Foundation’s website points out, happy healthy living can save your vision.