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Patient Perspective with Dan Sharp
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Dan Sharp is an IBD patient and advocate who works to help educate and empower patients. Healio Gastroenterology and Liver Disease recently spoke with him about his own experience with an insurer delaying his care as recommended by his physician, and his perspective on how widespread this problem is within the broader IBD community.
Healio: Has your insurance ever denied your therapy as recommended by a physician, and if so, how did this affect you, and how was it resolved?
Sharp: I’ve been quite fortunate to have unusually good coverage for most of my life, so my own care hasn’t been hindered by insurance denials nearly as much as a lot of people. When I was a pediatric patient, my insurance company denied the inpatient care my physician wanted for me; in this case, I was forced to discharge early and self-administer IV antibiotics via PICC line at home for two weeks. This required home care services and presented additional risks to my health. As an adult, my treatment was delayed when my gastroenterologist at the time recommended an off-label biologic that my insurance company subsequently denied. Although my physician’s office made some attempt to appeal the decision, he recommended I start a different therapy simply because I wouldn’t have to wait as long for it.
That decision bothered me, as it was not based on what my physician thought was the best treatment option for me. Unfortunately, the therapy was not effective for me, and so my health, which was already quite poor, continued to deteriorate. I ultimately moved my care to another center, whose physicians worked very hard to get my disease under control. This required several hospitalizations, steroids, multiple antibiotics, a biologic, total parenteral nutrition with home care services for six months, and nearly forced me into surgery.
Beyond that, I’ve almost exclusively worked with gastroenterology teams at IBD centers who will advocate on behalf of patients for the treatments they recommend. Outside of the aforementioned instances, if my insurers have given any pushback over the years, my physicians have kept it from me.
Healio: Describe your patient advocacy work, and given this experience, do you have a sense of how widespread this problem is among IBD patients?
Sharp: The focus of my advocacy work is primarily to help inform and educate people with IBD, that they may become more empowered and involved in their care. I believe that with good information, patients will make better decisions about their health, which can lead to better outcomes. I encourage patients not to make decisions based on fear but based on careful consideration with one’s medical team. I work to achieve this through my writing, by sharing updates from major medical meetings, by presenting at patient education events, by dispelling myths and misinformation on social media, and through direct interaction with fellow patients.
I’ve been an active member of the IBD community for many years, both online and in-person. I spent 4 years volunteering at two different Camp Oasis locations, getting to know many kids and families affected by IBD. I also work to organize and lead patient support Twitter and Facebook chats, in-person patient and family meetup events, and other events which have given me the opportunity to hear many of the obstacles patients face.
Within the IBD community at large, it is a regular occurrence to see and hear of people struggling with insurance denials. Patients often find themselves being forced to try and “fail” multiple treatments simply for a chance at the therapy their physician recommends. I believe the primary reason “step therapy” is still a widely used term in online patient groups is because of the presumption that insurance companies will force patients to work their way up to the treatment deemed most likely to work for them. Sadly, insurance denials can quickly deter many patients from their recommended treatment plan. I see many patients accept a denial without any attempt made at appealing the decision. They may have a physician who claims it’s not worth the trouble, as I have experienced in the past. Alternately, they may not be aware an appeal is possible, or how to begin the process.
Healio: What changes would you like to see insurance companies make to address this problem, particularly in light of the recent news about Aetna admitting it denied coverage without reviewing medical records?
Sharp: The primary change that insurance companies could make to better the lives of patients is quite simple; allow physicians to treat their patients. This has an added benefit of reduced healthcare spending over time, which should be an incentive to insurers. The news about Aetna is extremely frustrating, but it doesn’t come as a complete surprise. The idea that insurance companies would force a patient to go through “step therapy”, for instance, might make one think their reviewers are more uneducated than anything; that they are working with outdated information. However, to know that insurers are likely not even reviewing medical records before denying coverage makes the task of improving the situation seem all the more daunting.
Empowered patients work with their physicians to build a strong relationship; one with trust and honest communication. For many patients, it is a monumental decision to start a new therapy. I know that physicians often must work hard to help their patients appreciate the reasoning behind their recommended treatment plan. To have some unqualified, faceless outside party intervene to deny the decision a patient and physician have made together is a violation.
There needs to be actual transparency from insurers in their decision-making process. Additionally, the physicians involved in reviewing authorization requests for insurance companies need to be held accountable for their decisions. While they are no longer working directly with patients, their position makes them no less a part of an individual’s care. If they were ever good physicians, they are undoing that good work now by their indifference to the well-being of patients covered by their employer. Living up to the ideal of “do no harm” isn’t always clear-cut; but in this case it is. By denying coverage without reviewing records or honestly considering the prescribing physician’s appeals, these medical reviewers are absolutely doing harm.
If insurance company reviewers are basing their decisions on the financial interests of the company, then they must begin to acknowledge that the best evidence-based care in IBD is inherently cost-saving. Withholding a treatment being recommended by an IBD specialist is only going to increase the chances of further spending through hospitalizations, additional medications (including rescue therapies), surgeries that would have otherwise been unnecessary or unwarranted, home care services, etc. If insurance companies are only willing to consider how a decision will affect them financially, then they must begin to consider long-term savings through proper care over immediate savings through denials.
Healio: In your view, what can health care providers do to help their patients through this process in the event they are denied therapy?
Sharp: Living with IBD can make one feel powerless in many ways. There are many steps patients can take in order to regain some sense of control in their lives; becoming educated about one’s condition, seeking out the best IBD specialist one can, being proactive in one’s care, learning to advocate for oneself in all areas of life, never settling for “good enough” disease control, etc. However, insurance companies hold an enormous amount of power over patients; and this can be quite a disheartening realization for many. For a patient, knowing that you have a physician that will advocate for you and your best interest is enormously valuable. It builds trust, which is the foundation of any great patient-physician partnership.
Health care providers can and, sadly, must fight on behalf of their patients. Insurance companies do not have the best interest of patients in mind when making decisions, and they’re betting on clinicians and patients giving in to their interference. #Fightwme / #Fightwus is encouraging all involved parties to not settle, but to fight for what’s best for patients. I’ve been a patient long enough to remember when the treatments available for IBD were a meager few. Patients and physicians have many more and far better and safer tools at their disposal now to treat IBD. Health care providers must continue to fight for their ability to use the best available tools, on behalf of their patients.
I’m grateful to have a medical team that would fight on my behalf in the event of a denial. However, their time is far too valuable to be spent justifying their decisions to insurance company representatives who do not have a patient’s best interest as a priority. I would prefer that the clinicians and pharmacists involved in my care be free to spend their working hours treating patients, not justifying their expert decisions to largely unqualified reviewers who may not even be giving honest consideration to a treating physician’s request.
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- Dan Sharp can be reached at @DanSharpIBD on Twitter.