Your recurring back pain may be Ankylosing Spondylitis—there is help
There’s no cure, but there’s a way to manage
“I was only 18 when I first noticed the recurring pain in my back at soccer practice. As months passed and the pain would not go away, I sought professional help.I learned that I suffered from a rare and lesser known type of arthritis called Ankylosing Spondylitis that attacks the spine and causes stiffness and pain 24/7,” shares Karizza Calibag,a doctor.
If left untreated, AS can pose serious health risks to patients. Because of this, AS, part of a more extensive disease spectrum named Spondylarthritis, is a priority disease area for both the Department of Health (DOH) and Johnson & Johnson (Philippines), Inc. (J&J).
In fact, to enable and capacitate those suffering from AS, DOH recently collaborated with J&J to generate greater awareness for and address the gaps in caring for Filipino patients dealing with AS or Inflammatory Back Pain Disease. The forum themed “Kalusugan at Kaunlaran ng Pilipinong May Kapansanan, Isulong sa Gitna ng Pandemya” was held in support of DOH’s agenda to improve health literacy, quality of care, and appreciation for primary care in the Philippines.
Educating the public on the rare disease and its potential consequence is the critical first step to constructing a program for a more long-term transformation in AS. The important next step is to invest in local studies that can give a clear indication of the exact number of patients affected by AS in the country.
Related to this, DOH, along with its partners from the PRA, J&J, and ASAPh are encouraging suspect patients to seek early consultation from specialists so that they may establish a referral system among primary care physicians and rheumatologists so these diseases can be addressed as early as possible.
This year, two doctors from the Philippines Rheumatologic Association are conducting vital research initiated by the Axial Spondylarthritis Association of the Philippines that will output demographic data and paint a better picture of the quality of life of a person living with AS. The resulting data will be critical to encouraging the country’s governing bodies in Health to pay more attention to patients suffering from the disease.
“Understanding that there is no cure for AS and that its effects on a patient can be debilitating for his/her daily life long-term, what we hope to do is catch the disease early among suspect patients—in that, it will allow for us to manage its effects better over time as it progresses,” said Dr. Bernadette Heizel Manapat-Reyes, chair of Spondyloarthritis - Special Interest Group of the Philippine Rheumatology Association (PRA)
‘Understanding that there is no cure for AS and that its effects on a patient can be debilitating for his/her daily life long-term, what we hope to do is catch the disease early among suspect patients—in that, it will allow for us to manage its effects better over time as it progresses.’
Says Dr. Erwin Benedicto, head of Medical Affairs at J&J: “As someone who is both a doctor and a patient suffering from AS, it is difficult for me to watch fellow Filipino AS patients left to endure the pain of AS because they cannot afford treatment. One injection is the equivalent of one month’s salary for many. Many who cannot afford treatment resort to alternative medications that help in some way to address the pain but do not treat the root cause of the pain. Hence the disease continues to progress which can lead to disability. Although this disease is rare, it is important for us to be able to support those who suffer from its effects by helping them access the right medication and treatment they need.”
“When you know what you’re treating, treatment is easy to come by. I believe, however, that acceptance is the most difficult aspect of any chronic illness. It's difficult to accept that you’ll now have to live with an illness that can cripple you, complicate your medical history, and even kill you,” explains Dr. Karizza Calibag, herself both a doctor and an AS patient, referring not just to the physical pain but to the pain of losing one’s everyday life which should encourage them to seek AS medication and therapy.
Treatment means getting the diagnosis right. Since Dr. Karizza was diagnosed with AS, her doctor started her immediately on biologics such as injectable medications that target the source of overdrive inflammation in the body. In addition, she was advised to continue a non-steroidal anti-inflammatory drug (NSAIDs) to relieve pain and help further reduce the inflammation. Initially, she received five doses a week until the doses tapered off to once a month. Today, she no longer has to take NSAIDs because her pain is under control with monthly biologic injections.
It was difficult for Dr. Karizza to describe to her family and friends what she was feeling or talk to them about a disease which they had never heard of. What was clear was how AS began to affect not just her physical well-being but her emotion and mental health as well. She shares how during her medical residency, she needed to explain to her peers why she had to take the elevator instead of the stairs because she suffers from the morning stiffness that is typical of those who suffer from AS and the shortness of breath that comes with restrictive lung disease which she also suffers from. At her residency, however, she did not want to be treated differently because she suffered from a rare disease, so she did not disclose her illness to any consultants. She shares that she is fortunate that her colleagues at work understood her challenges and supported her at that difficult period in her life. She worked hard to be able to get treatment.
Because of the debilitating consequences of AS, not only the patient but also our families and careers suffer.
“For every person suffering from AS, it's not just the person with AS who suffers. Their families and caregivers suffer because of its debilitating effects on the patient. Therefore, changing one AS patient’s life for the better changes two or three more lives of those who care that patient. That’s the ripple effect of AS in our lives,” adds Dr. Erwin.
Across the globe, J&J has been working together with local government units and medical associations in providing accessible treatment to AS patients through their efforts led by Janssen Pharmaceuticals. For more information on how J&J can help patients with AS, click on this link: https://doh.gov.ph/press-release/DOH-J%26J-PHILIPPINES-HOLD-FORUM-TO-INCREASE-AWARENESS-ON-INFLAMMATORY-BACK-PAIN