Imagine that you are an executive in the fast-moving, exciting hi-tech sector. The same day your start-up receives venture capital funds, you are on the operating table having a malignant tumor removed and diagnosed with two rare autoimmune diseases. The procedures and treatments that ensue have more unintended consequences which require even more medical intervention. This was and has been my husband’s reality for over 20 years. His story is more common than you may think.
At the Milken Future of Health Summit 2022, Kate Wears, ED, Myhre Syndrome Foundation summed it up well when she simply said, “Doing life can be harder when you have a rare disease.”
Over the past several decades, medical prowess increased the number of individuals who live with diseases that may have been terminal in the past. And for that we are grateful. Innovation, prevention, and technology extends lives. But day-to-day disease management and chronic pain create anxiety, stress, absenteeism, and a host of other disruptions. Hospitalizations are followed by a discharge process that assumes the patient and caregiver have the information they need to move forward.
However, the exhausted patient only understands a portion of what is being communicated, and the specialist the hospital recommended has a six-month waiting list. Before a care plan is fully in place, patients and caregivers must make decisions with incomplete guidance resulting in additional medical and emotional trauma.
In a 2019 paper “Inconvenient Truths About Human Longevity,” the authors note some medical researchers believe that “there are biologically based limits to the duration of life, and those limits are being approached now.” We may be seeing these phenomena with the rise of dementia, chronic pain, autoimmune disease, and new forms of cancer and rare disease.
RareX, the forward-thinking organization dedicated to helping transform the support of patients estimates there are between 7,000 and 10,000 rare diseases, and some believe the number is higher and increasing. In addition, over 50 million Americans live with chronic pain, and individuals with autoimmune diseases regularly suffer from joint and muscle pain, abominable pain, and discomfort or diseases of the skin.
Longevity is something we all desire, but it’s good health we need and crave. To achieve good health given our conditions, medical and insurance systems need to address both the physical and mental scars of living adequately and comprehensively with pain, invasive treatments and seemingly endless doctor visits and repeated testing. Solutions and payment systems also must integrate behavioral and clinical health.
It is time to address the human toll and find ways to alleviate common points of frustration and inadequacy. Here are the steps that will help reduce the burden of disease and increase quality of life.
- Reimburse nutrition counseling and medically tailored meals for individuals with complex medical conditions such as cancer, Crohn’s Disease, and food allergies.
- Prioritize investment and approval of medical technologies and therapies which increase ease of use and reduce time required. And importantly, keep the telehealth waivers in place.
- Acknowledge comorbidities in the process by eliminating information silos. Patient advocacy groups and medical researchers need to be able to collect and share data across patient registries.
- Lose healthcare’s transactional mindset by prioritizing good health as the primary goal of medicine and public health. A holistic approach, coordinating treatment across nutritional, behavioral, and clinical support, will result in improved patient outcomes.
- Put data in the hands of patients, helping them feel empowered and confident in decision-making. Patients should be equal partners in the information flow.
- Foster rich, culturally appropriate discussions and conversations between care givers, families, and the patient. Remember that one size fits all solutions don’t work.
- Communicate back to patient advocates when a drug is not approved and why. They participated in the trials and deserved to know what happened.
If you are a patient, be a strong self-advocate. Only you can tell a doctor what you are experiencing and when and where you last got care.
And, as we move forward to help all people live well, the Voice of the Patient must be at the center of decisions made by government, researchers, and drug developers. Patients are not just a phenotype, a genotype, or a piece of data. They are human beings with lives that are impacted daily by their disease.
Written by Lisa gable.
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