By DAVE WHITE

It had been 10 years since I’d seen a doctor when I arrived at the Emergency Room at George Washington University Hospital in October 2009. I was able to climb the first flight of stairs, but after I froze on the second, they brought me in on a wheelchair.

That was the first time I heard the dreaded words, “Your kidneys aren’t working.” I was put on dialysis immediately, and my life transformed into a series of tests and procedures. But even after three weeks at the hospital, it didn’t sink in that there was no cure.

I checked most risk factors for kidney disease: I ate the wrong foods, smoked more than a pack of cigarettes a day, drank too much beer, and didn’t exercise much. But the biggest risk to my health was not getting regular check-ups. I didn’t think I needed them, or that I had a part to play in my own health.

I hated going to dialysis three times a week. Since I could no longer work, the $20 cab fare each way was an expense my wife and I struggled to afford, so I skipped often. When a nurse warned me that if I missed three sessions in a row I would have to be dialyzed at the hospital, I decided this meant I could get away with one session a week.

The care plan I received from my providers called me “non-compliant” seven times. I felt they had written me off as a lost cause and saw no point in working with them either.

Finally, I was called into a meeting with six nurses, social workers, and clinic staff. When I said I skipped dialysis because money was tight, the charge nurse said, “We’re going to get you resources for transit and help you plan good meals.”

I was shocked – I didn’t know how support services worked. The nurse continued “But you have to do your part or you’re not going to be around much longer.”

No one had said this in such blunt terms before. I left the room, went home, looked at myself in the bathroom mirror, and said, “They’re right. You can do better. You have to do better.”

Fourteen years later, I am lucky to be alive to see the Centers for Medicare and Medicaid Services (CMS) include measures that place the patient’s voice at the center of clinical care. CMS has recognized that supporting patient activation, building a person’s knowledge, skills, and confidence around managing their health, and addressing social needs is critical to helping people like me get the support we need to get and stay healthy.

Getting support to take a more active role in my care made a difference, and will for other people living with kidney disease and a range of conditions as CMS includes the Patient Activation Measure and screening for social drivers of health (SDOH) in the 2024 Merit-based Incentive Payment System (MIPS) Physician Fee Schedule which was officially published on November 16.

I began my journey as a person with kidney disease angry and in denial. But when I realized I could take charge of my health and ask for help, things started to change.

Going to dialysis regularly wasn’t enough. I needed to know more about how to manage my condition when doctors and nurses weren’t around. My care team helped me read nutrition labels, so I could modify my diet to improve my kidney health. I quit smoking and started exercising: one push-up a day was all I could manage at first, but I kept going.

Once I was healthy enough to return to work, I realized this was hard while going to dialysis during the day. I started asking questions and found out I could switch to doing nocturnal dialysis or doing dialysis at home. Around the same time, I started advocating for myself so I could get a transplant and got on the list at three centers.

I was so proactive about managing my health, I can honestly say I didn’t spend a single day waiting for a kidney. It ultimately took four years to find a match and getting my transplant wasn’t easy, but when I heard the nurse say, “You can eat whatever you want now,” I began to feel like myself again.  

Treat the person, not the disease is a powerful axiom, but in my case and many others, it takes the patient and their doctors and nurses to make this work. Initially, my care team assumed I had resources to pay for healthy food, and transportation to dialysis, and I didn’t know I could get help. Only when the charge nurse asked me to do my part did I feel seen as a key player on my care team, as an equal rather than a patient being told what to do.

Our healthcare system focuses on medicine, and issues like housing, transportation, and what’s going on at home are pushed to the periphery. But supporting activation in patients, giving them the training they need in their new role, and creating the opportunity for them to ask questions are critical to providing whole-person care. When people like me get off dialysis and get a transplant, it’s not only better for our quality of life, but also reduces healthcare costs.  

I went from feeling hopeless about my future to thriving as a person living with kidney disease. When people see me speaking, advising other people about how to advocate for better care, they can’t imagine me then. But I tell my story because many others are judged as “non-compliant,” hopeless cases. They deserve a chance to attain their optimal health no matter which stage they have reached in the patient journey.

I’m optimistic that including patient activation and screening for SDOH as quality measures in MIPS will help engage more patients and open the door for them to ask for the resources they need to lead healthy and fulfilling lives. 

Dave White is  a proofreader for an international law firm and self described “Kidney Warrior” — a grateful kidney transplant recipient and an informed, engaged healthcare consumer and patient advocate

Episode 17 of “The THCB Gang” was live-streamed on Thursday, July 9th! Watch it below!

Joining me were some of our regulars: patient advocate Grace Cordovano (@GraceCordovano), health economist Jane Sarasohn-Kahn (@healthythinker), WTF Health Host Jessica DaMassa (@jessdamassa), and guests: Tina Park, partner at Diagram (@diagramoffice) & Shannon Brownlee, Senior VP at the Lown Institute (@ShannonBrownlee). The conversation focused on asynchronous care, the gap between patients & technology, and the Supreme Court ruling on employers’ ability to limit women’s access to birth control coverage. It was a great and engaging conversation with some of the top health care experts in the field.

If you’d rather listen, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels — Zoya Khan

By GRACE CORDOVANO PhD, BCPA

Being a patient or a carepartner can be a lonely, powerless place.

There’s no high powered legal or lobbying team to help support you in your or your loved one’s health care journey. There’s no PR team at your beck and call. There’s no advisory board, no executive committee, no assistants, no chatbots or AI-powered technology coming to the rescue. There’s no funding or a company sponsoring your efforts.

There’s no course in how to be a professional patient or carepartner.

There’s no one there in the stillness and dark of the night, when you are in the quiet of your thoughts, the privacy of your personal space, where there are fleeting moments that you don’t have to be strong and courageous. There is no one there to console you, support you as you lay there willing to make a deal with the devil for the slightest glimmer of hope, the slightest bit of clarity, or slightest bit of peace.

As a the carepartner to a loved one who is sick or disabled, many wouldn’t second guess charging head first through a thousand wielded swords if it meant a hope or a cure.

As an advocate, the majority of the work you do is self-created, self-supported, and unpaid. A calling. An undeniable, magnetic force that pulls you in because you cannot turn a blind eye no matter how hard you try. Because you cannot bear witness to human suffering and not do anything. Because you’ve been there and you can relate to another’s pain, grief, and sense of hopelessness and it is unacceptable to not help ease the heaviness of another’s burden.

As an advocate, I know I am not alone when I wonder if my advocacy work is worth it. Does it all make a difference? What did over 20 years of advocacy work improve? Are all these hours of work into the depths of the night worth it? Is the constant mental, emotional, and physical effort of being perpetually on high alert going to bring change? Do the words spoken from the podium, the panels, keynotes, workshops, fireside chats, and the discussions that ensue after handing in my lavaliere or hand held microphone cause actionable change? Does anyone listen to the podcasts and interviews and change their business strategies? Do the business cards and LinkedIn connections exchanged matter? Do the thousands of hours I’ve spent carefully and thoughtfully placing words on paper in articles and blog posts to capture the patient and carepartner voice and perspective make a difference? Does the time spent dedicated to continuing conversations across 3 social media platforms matter? Was all the time I’ve spent away from my family, my children, on the road, traveling to conferences (often at my own expense) to amplify the patient and carepartner voice worth it? Are missing family occasions, children’s games, school events, outings with friends, as well as putting one’s marriage, self-care, one’s physical, mental, emotional, and spiritual being at risk worth it?

After over 20 years of advocacy work, when I close my eyes and reflect, I cannot unsee and unhear what I have seen:

• The people who have died horrible deaths because of cancer, with not a spot of dignity left.
• The parents who fought tirelessly to find hope of a cure or the gift of more time with their dying child.
• The people who have watched as their parents or grandparents died, sometimes slowly, unfathomable deaths, from their heart failure, dementia, cancer, diabetes, and other comorbidities.
• The people who struggle with their own cancer diagnosis while caring for their aging, sick parents, and their also disabled and medically complex children.
• The people who are disabled, who have been denied the critical care they need, the medical equipment and devices, and the standard of care treatments prescribed by their doctors, because insurance companies deemed them not medically necessary. Or worse, being denied their actual Medicaid.
• The people living with chronic illnesses who are denied their life-saving treatments by insurance companies daily, forced to see regressions, relapses, painful, sometimes irreversible progressions of their diseases.

The tears stream down my face as I recall the hundreds, thousands, of pleas I have been faced with over the last 20 years. Pleas, stories, cries for help that break one’s soul and leave you gutted.

There is a common denominator here. These people could not get access to the information they needed for the next step in their, or their loved one’s, care. Information they needed to:

· schedule a second or third opinion appointment

· to organize a tumor board

· to consider clinical trials

· to ask the right questions

· to pick the right doctor or hospital

· to fight an insurance denial

· to do a peer to peer and expedite care needed themselves

· to make an informed decision about an upcoming surgery or procedure

· to prevent a medical error from happening

· to fight an exorbitant medical bill

· to understand their diagnosis and treatment enough to know it wasn’t too early for palliative care

· to know that it was time for hospice

This is what information blocking looks like boots on the ground.

These are the realities people face when they are living with life-altering, life-limiting, absolutely earth-shattering diagnoses.

While patients and their loved ones can’t get the information they need to make educated, empowered decisions about their care, even while actively dying, hospitals, EHR vendors like Epic, as well as MANY other entities, have ludicrously shared and sold the same patient information for commercial purposes, to “improve hospital operations”, for “re$earch”, leveraging the legal loopholes of HIPAA, stating all is legal, this is business as usual. Without needing informed, explicit patient consent. Without any effort dedicated to patient education, public awareness, and transparency under the guise of “Nothing to see here”.

As patients and carepartners, WE WILL NOT STAND FOR THIS A MOMENT LONGER.

Thank you Ms. Judy Faulkner, CEO of EPIC, for your recent letter urging some of the biggest hospital CEO’s and presidents to oppose the proposed rules to improve interoperability and grant patients access to their information. You have made it crystal clear that you are not aligned with the real-world unmet needs and the barriers patient and carepartners face daily. Thank you for illustrating what paternalism looks like in 2020.

Thank you, Mr. Tommy Thompson, former governor of Wisconsin, for your guest column on why the proposed health IT rules would be a detriment to EPIC and Wisconsin’s economy. You have made it crystal clear that the business priorities of Wisconsin are of a greater importance than legal rights and the sanctity and dignity of the lives of all the patients of this great country of the United States of America.

Thank you for helping me refocus. Thank you for helping me answer the questions and address the self-imposed imposter syndrome that can momentarily cloud one’s perception. The answer is: IT IS ALL WORTH IT.

I am more laser-focused than ever before, more confident than ever that patients, carepartners, advocates, those in authentic support of first doing NO HARM, and those in support of partnering with patients and carepartners MUST to come together.

I want all patients and carepartners to know these truths: No one is coming to save us. Together, we can save ourselves and OUR healthcare as we know it.

The time is now to #UnblockHealth. I’m ready to blow the doors off this or at least die trying.

Respectfully Yours in Unblocking Health,

Grace Cordovano, PhD, BCPA

Grace Cordovano, PhD, BCPA is a board-certified patient advocate specializing in the oncology space, a patient experience enhancer, and information unblocker.