Adam Hayden – Patient Advocate Living With a GBM
Throughout many of the discussions during the National Brain Tumor Society’s virtual events for “GBM Awareness Day” on Wednesday, July 22nd, the issue of healthcare costs was addressed. If you did not read my Post about “GBM Awareness Day” and the hard-hitting facts on GBM, known fully as glioblastoma multiforma the link is here:
Particularly, patient advocate Adam Hayden focused on the critical issue of how extremely burdensome medical care is in America for those of us stricken with a brain cancer diagnosis. I’ll just add that this applies across the board for anyone who is dealing with a chronic illness. Presumably, based on his presentations and articles safely Adam would agree.
I haven’t had the honor of meeting Adam in-person, although he is an unbelievable advocate on behalf of NBTS and many other organizations. I’ve known of Adam and his work with NBTS for years. I’ve watched videos of his speeches and presentations. I follow him on Twitter and Instagram, and I follow his Blogs. His brilliance coupled with his perseverance and strength floor me every time I listen to him or read one of his articles.
There are tons of articles online by and about Adam. His credentials alone leave me in awe.
Adam Hayden is a philosopher of science, a champion of the humanities in medical education, an advocate for palliative care, and a person living with brain cancer (glioblastoma). He serves on multiple national advisory councils focused on patient engagement and advocacy, he is a member of the American Association for Cancer Research (AACR) scientist-survivor program and he co-moderates a monthly social media chat and a virtual support group for the brain tumor community (My insert here: That virtual support group is BTSM Chat or #btsm on Twitter).https://www.cancerhealth.com/blogger/adam-hayden
Diagnosed with glioblastoma in 2016, Adam has published on medical education, cancer survivorship and the philosophy of illness, in both popular and academic press. Adam completed requirements for his graduate degree in philosophy while in active cancer treatment, and he was recently awarded the Distinguished Alumni Award by his university. As a champion for early intervention of the palliative care service, Adam offers a unique perspective on the end of life, as a young dad and husband.https://endwellproject.org/living-while-dying-a-contingency-plan/
Adam is a husband, as stated above, and father to three young sons (not two, which I accidentally tweeted the other day)! As I wrote to him, “Numbers are not my friends!” 😉
SIDE NOTE: Sometimes I literally forget how old I am, and NEVER ask me to calculate the tip on a bill! Also, as anyone with a brain injury, neurological issue or brain tumor knows there is a standard neuro question, “Can you count backwards by 7 starting at 100?” This gets me. Every. Single. Time. You’d think at this stage I should just have it memorized, but nope. I constantly get stuck at 86. By then, I’m lost.
You can follow Adam’s Blog right here on WordPress. I highly suggest it! You can deeply appreciate his writing regardless of whether you’ve been affected by brain cancer or not, though within the brain tumor community he is an absolute rock star!
The Cost of Being Sick In ‘Merica (also known as America)
Beyond merely one day, like Wednesday’s “GBM Awareness Day”, as a patient advocate Adam regularly addresses the enormous burden of healthcare costs on patients and their families. He can certainly speak to this, especially given that GBM is one of the most expensive cancers to treat.
Adam is light years beyond my intellectual level, so I will be taking information directly from his articles. I will also be throwing-in some of my own thoughts here and there. I will do my best to try to clearly distinguish his thoughts vs. my own.
If you’d simply like to read Adam’s Posts follow these links: https://glioblastology.com/2019/08/12/we-wait-we-wonder/ and https://glioblastology.com/author/adammarchayden/page/2/
Income & Disability Benefits:
To begin, given Adam’s diagnosis he relies upon disability benefits and some part-time work as a public speaker. However, any additional income beyond his benefits, of course, must be reported. Adam explains that rather than focusing his time thanking those who invite him to speak, he expends his energy “completing paperwork” to account for any added earnings.
I too can no longer work. My only income comes from my former law firm’s private long-term disability plan and Social Security (required by the private disability carrier). I essentially earn 60% of what was my full-time salary, for which I am fortunate. So many are not as fortunate! Yet, I’m still quite heavily taxed on those benefits. Further, those payments ONLY began after a required 6-months of having to live on $660.00 a month on temporary disability.
I live in the NYC Metro area. Do you know what $660.00 a month buys you in this area? A whole lotta nothin’! It barely covers groceries. If you rent even a semi-decent place to live in this area, you’re likely paying at least $2,000 a month. Without my husband and parents, I’d be homeless and that is not a joke.
To further demonstrate this point, Adam’s wife, Whitney, works FOUR JOBS: 1. inpatient occupational therapist; 2. sub-acute care for the elderly occupational therapist; 3. developmental preschool occupational therapist for children; and 4. part-time yoga instructor.
Adam also discusses a very key point in his articles – our benefits are NOT guaranteed. We have to undergo medical reviews conducted by the entities that provide our crucial disability payments. I don’t know the credentials of the person sitting in some cubical, looking at my file and deciding that I am eligible for continued benefits. Additionally, I do not know if threatened cuts to Social Security are legitimate.
Like Adam, I have to justify “why I cannot work” despite undergoing 7 brain surgeries in under 6 years; surviving brain cancer twice; having epilepsy; having mobility issues that limit the use of my left hand and that have weakened my left leg requiring me to wear an AFO (leg brace) and walk in public with a cane; as well as a host of other issues. Additionally, theses entities require our doctors to fill out paperwork justifying why we cannot work. Beyond that, we individually have to fill out paperwork, which for me is really just a reiteration of my doctors’ notes. I recall last year having to submit a list of my medical appointments and hospitalizations going back 2 years. That required me to type up a 4-page single-spaced attachment! I don’t even know how many hours it took.
Now, as an attorney that practiced civil defense litigation in complex construction accident cases, I handled files in which a guy would slip on ice on a construction site and claim he could never work again because he broke a bone in his foot. He’d demand $10 million to settle. How did those people get lifetime disability, yet people like Adam and I must go through the bureaucratic BS we deal with?
Anyone who thinks disability is some “free ride” is uninformed and/or purely ignorant, and very very wrong.
Adam and Whitney have greatly benefited from friends, family and community support to simply survive financially. This is true for so many of us stricken with cancer and chronic illnesses. Adam addresses his humble gratitude to all the support his family continues to receive.
He uses a fantastic term to describe the situation so many of us experience – “financial toxicity“.
This is so poignant
I worked since I was in college. When I was first diagnosed, I was earning a six-figure salary. I was an independent professional with a taxing career. Now, I remain very much reliant on my parents even though I’m 40 years old. My parents are in their 70’s. Yet, they continue to work 7 days a week, not simply to support me, but it’s definitely a factor. I feel extreme guilt over this. I worry constantly about their health, especially because they continue to work through this pandemic.
Further, my husband’s union only allows him to work when they send him out on jobs. Yet, because there’s so many members, they can’t employ everyone all at once, which seems ludicrous if you see the amount of construction in NYC. Thus the saying, “It’s a great part-time job.” We never know when that “reduction in workforce” slip will come and he then has to go on unemployment. Then, we just sit and wait for another call from the union that can sometimes take 5-6 months!
I’ve been gifted checks from family friends, which I certainly could never repay. These angels on Earth would never accept it anyway.
On community support Adam says:
But you recognize that community support has a limit. And asking for help is humbling, if not humiliating, and you think maybe you should bite the bullet, find a way to return to work full time, lose the benefit status, but make up the earnings in income.Adam Hayden (emphasis added)
Whoa! Does this ever hit home!
I constantly wonder, “Could I just go back to work?” or “Even if I could just go back to work, what happens when I get a seizure and need 3 days to recuperate?” or “What happens if I need another surgery?” which turns out, I indeed do need! Additionally, stress brings on my seizures. Is there really any job that is stress-free? In addition to all these questions, the issue of losing my current disability benefits and having to go through that 6-month temporary disability period all over again is too risky.
Making Ends Meet, Or Trying To At Least:
Adam hits it home citing to an article review from a National Cancer Institute (NCI) report:
Patients with malignant brain tumors accrued health care costs that were 20-times greater than demographically matched control subjects without cancer.National Brain Tumor Society’s Blog: https://blog.braintumor.org/brain-tumor-facts-figures-march-2018-cost-of-care/
Adam breaks down what life is like trying to make ends meet:
- The credit card bills rack up.
- Out-of-pocket co-pays are required for medications, specialists and other medical expenses.
- Yet, Adam and his wife, Whitney, must face questions like:
- Medications or kids sports?
- Co-pays for the best doctors and mental health professionals or trips to the zoo and new clothes for school for their kids?
- “Maximize each day of my limited life that remains, whether that is three months, three years, or thirty, or sit at the dining room table with Whitney for another month worrying about bills?”
As for me, despite having excellent health insurance (by American standards) through my husband’s union, last year I still paid over $5,000 for my medications, hospital and physician visits (that encompasses my 2 surgeries, hospital admissions, doctors’ visits, diagnostic tests, PT & OT visits) and transportation to and from visits.
This doesn’t even get into the countless hours, upon hours patients spend:
- On the phone with insurance trying to determine why this or that hasn’t been covered
- On the phone or emailing doctors’ offices:
- Making appointments
- Trying to get prescriptions re-filled
- Reporting some kind of new symptom or issue
- Rescheduling appointments because now you realize you have a conflict and accidentally double-booked appointments
- Scheduling another surgery
- Scheduling pre-surgical testing
- Scheduling post-op appointments
- Scheduling scans
- On the phone with the pharmacy because they claim they never received your prescription or your doctor’s refill request
- Don’t even get me started on mail order prescription companies, like Express Scripts that unilaterally decide whether you can use your own, local pharmacy or require you to use their services, or else pay full price for your medications!
- I actually filed a Complaint with the Better Business Bureau against Express Scripts due to their unscrupulous business practices
- Going online to stay informed on the latest publications, research and information on your disease
- Going online to connect with fellow patients/survivors just to stay sane!
BEING SICK IS A REALLY, REALLY BAD JOB THAT ONLY PAYS IN FRUSTRATION, PAIN AND HEARTACHE
Having Health Insurance Is A Luxury In This Country
Despite all of the above, at the very least I have health insurance. It has become a luxury in this country to have health insurance, and to take sick days for that matter. An estimated 84 million Americans were uninsured or underinsured, before the pandemic struck!
Although I was born in N. Ireland, I was raised mostly in the States. All my family (besides my parents) are in Ireland and the UK. They just cannot understand the amount of money I’ve paid out-of-pocket for my treatment.
The number one reason for bankruptcy in the States is due to medical bills, including those who have health insurance!
**WARNING: I’M GOING TO GET POLITICAL**
A certain portion of America believes that if we offer “healthcare for all”, there will be a huge increase in taxes. I’m sorry, but Americans are OBSESSED WITH TAXES! My father always said, “The only thing guaranteed in life are death and taxes.”
People seem to be totally ignorant to the fact that when people cannot pay their medical bills and have to file for bankruptcy, those unpaid bills essentially result in increased medical charges, increased insurance premiums or deductibles for everyone, and a huge problem in that people use the ER as their primary health care provider. That leads to an enormous burden on our healthcare system. So everyone loses.
Taxes go to pay for education, the roads we drive on, the insane military industrial complex, the failed useless “war on drugs” and so much else. So why NOT healthcare?
I clearly understand there needs to be a vaccine for the COVID virus. Yet, the American government just entered into a $1.95 BILLION agreement with Pfizer to develop a vaccine, which ironically enough is one of Ireland’s leading employers. Another pharmaceutical company, Novavax, received $1.6 BILLION and Moderna received $483 MILLION for vaccine development. The federal government cannot provide its citizens with healthcare though?
Living here, but growing up in a more European-type of household and traveling all over the world, I don’t subscribe to the “America is the greatest country in the world” attitude, nor the “Me, me, me” attitude that is so pervasive here.
Every country has its problems. I’m well aware. However, the utter ignorance surrounding healthcare is truly baffling.
I have friends that literally would not have been able to get their chemo without the Affordable Care Act ( I will NOT call it “Obamacare” ). I also know of cancer patients that forgo treatment because it’s either get chemo or pay the mortgage.
This extends to all chronic illnesses. I know people with chronic conditions that have to choose whether they fill their prescriptions or pay for their car insurance so they can drive to work. Take insulin. just for example. It was discovered in 1922! It is one of the most basic drugs on the market. Yet, Americans have turned to buying their insulin in Mexico because it’s cheaper than going through insurance, or paying out-of-pocket in this country! That is pure insanity.
Now, with the pandemic, the number of Americans without healthcare has soared even higher. According to a report on July 14, 2020:
An estimated 5.4 million Americans lost their health insurance within the first few months of 2020 amid mass layoffs during the coronavirus pandemic.
More Americans became uninsured between February and May than over any year in history, according to a report from nonpartisan consumer advocacy group Families USA, which compiled state-by-state reports estimating Covid-19’s impact among workers under 65.
In that time, at least 22 million Americans lost their jobs or left the workforce. The public health crisis also has stripped roughly 16 million workers and their families from employer-provided health plans, according to the Economic Policy Institute.https://www.independent.co.uk/news/world/americas/coronavirus-health-insurance-pandemic-families-usa-report-a9617226.html (Notably, this is a U.K. source. Most Americans likely aren’t even aware of these numbers, just my two cents, for what it’s worth)
A Great Article About Healthcare As A “Human Right” From A Writer in the U.K.
I follow a U.K Blogger with dyslexia, mental health and physical health problems. The Blog is entitled “The Unwanted Life“ . I thoroughly enjoy the Blog. As the author says, it is about “invisible disabilities” and his goal is to end the stigma of these conditions, to help, educate, inform and inspire others.
Please enjoy the Article and the Blog:
HUMAN RIGHTS IN HEALTHCARE
Follow the link here to the Article: https://unwantedlife.me/human-rights