When I first got sick several decades ago, I wandered through the health care wilderness for a long time with unsatisfactory results.
Lately, I’ve been engaged in conversations with patients and health care professionals about how to help patients access better health care, as well as learn more effective self-management. I’ve been reading a lot of research, articles, blogs and commentary.
All this has me thinking about how the landscape has changed in the last two decades, so I’ve put a finger to the wind to see how it’s blowing these days. What are patients going through now that is different from my experience, and where might this lead us?
My opinions are anecdotal, but hopefully offer food for thought and suggest areas where we might raise our collective voices for positive change.
Primary Care and Diagnosis
I don’t hear patients report that their search for a diagnosis is much different than mine was 20 years ago.
It still takes too long to get a diagnosis, patients aren’t referred effectively when their physician can’t identify what is wrong or how to treat it, and there remains an enormous fiscal and psychic cost to allowing patients to become progressively more ill before beginning treatment.
I commonly hear reports of 3 to 9 years before diagnosis, particularly from patients with invisible symptoms like pain, fatigue and cognitive difficulties.
Patients experiencing chronic pain and other symptoms need a clear starting place other than the physician they saw when they were healthy.
We don’t yet have a better model, but we have begun the conversation about establishing an effective primary care system, led by highly trained internists, whose job is to diagnose and/or refer pain patients. I don’t think we will build this specialty until we offer incentives, such as assistance with medical school debt, as the need is so much greater than existing capacity, particularly as more patients become insured through the Affordable Care Act.
Western vs. Alternative Medicine and Therapies
Here is an area of progress, in my opinion. I think many more doctors and patients understand that each patient is unique and needs to find the treatment options that work best in their particular case.
I think that greater numbers of western physicians who treat patients with “gray diseases” (those that are hard to diagnose, treat and cure) are more likely today to offer what they can, and then collaborate with patients in seeking other therapies that might also help them, like physical therapy, acupuncture, massage and nutrition counseling.
A few decades ago, it was more common for patients and providers on both sides of the aisle to take a rigid stance against anything outside of their bias or experience.
Chronic Illness Care
Again, we have a long way to go to effectively and respectfully serve the chronically ill, but finally there is a national dialogue that this is an enormous, costly population and that we are not effectively addressing the need.
The existing health care system seems to be taking a first stab at a fix by focusing on the epidemic numbers of lifestyle-related illnesses such as those caused by obesity, high cholesterol, high blood pressure and smoking. It seeks change by blaming the victim.
It is true that these strategies can help all Americans learn to live more healthy lives, but in my opinion, it doesn’t ask for enough change from inside the healthcare system. In addition, the millions of chronically ill patients whose diseases are not related to unhealthy living remained where they have long been, sidelined and inadequately served by the system.
Dramatic Interventions and Cures
America is a “fix it” country and we love it when the development of a game changing new drug, machine or surgery changes the course of medical history.
But this love affair neglects illnesses that benefit more from effective management than dramatic interventions, and those where the intervention varies depending on each unique patient.
One recent development in this arena is that drug manufacturers are bypassing physicians and going straight to the patient to sell their new and promising products. This week I saw a television ad that advised me to “insist that my doctor let me try” the drug being promoted.
Twenty years ago, I deferred to my doctors on my options for drug therapies and when a particular drug was prescribed, I generally had not heard of it.
Web Based Support for Patients
A transformation has occurred on the web. A few decades ago patients seeking support and help for their particular illness could read books, attend local support group meetings or attend patient conferences. National patient groups had web sites, but they weren’t particularly interactive.
Now there are so many web resources for so many needs it can be overwhelming to try and navigate them. The really great news is a person in severe pain, or who is disabled, weak, or unable to leave the house, can find so much help and support from right where they are.
I do think there are a few cautionary notes. One is that information on the web is not necessarily vetted or verified, so there is risk of getting involved in something fraudulent or even harmful.
Second, I find that many of the patients seeking support on the web have not had good outcomes and are understandably angry and desperate. If most of the people they meet online have similar stories, it can create an atmosphere of hopelessness that may be skewed from reality.
The Affordable Care Act
The Affordable Care Act, also known as Obamacare, while controversial and complex, in my opinion offers the most dramatic potential for improvement in chronic illness care in many decades.
Denying insurance for pre-existing conditions will no longer be allowed. Movement to an outcomes based system, with an emphasis on helping people live as healthfully as possible is encouraged.
We are a capitalistic country and believe deeply in competitive, market based models, but the ACA begins to move health care away from this for-profit model. I don’t see this as something that will happen quickly or easily, but it is my personal belief that services delivered to vulnerable populations, whether they are children, the poor, the elderly, the incarcerated or the sick, are most appropriately structured as not-for-profit, because these populations generally do not have the economic or political strength to defend themselves or fight for their rights.
Therefore, it is not a market opportunity, but a social obligation, to care for them. We’ve got a long way to go on this one, but my finger in the wind indicates a hopeful start.
Joy Selak lives in Austin, TX. She has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.
Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the four phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well — and is written from the alternating perspective of a patient and her physician.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.