About three months ago, my family was devastated with the news that one of our dear loved ones has Stage 3 breast cancer.
To be honest, my dear sister Dede Miller discovered the lump about a year and a half ago, but only sought treatment when it erupted and started to bleed profusely. The family had no idea until she rushed herself to the ER in LA County, but why did she delay so long?
Part of the reason is the completely understandable fear of “The Big C,” but most of the reason was that, as a poor person living off of doing odd jobs for cash, she had no easy access to healthcare. Would things be different now, if Dede could just walk into her doctor and be examined and know that a compassionate and accessible system could help? A resounding, “yes.”
For her own reasons, initially wanted to remain anonymous, but I feel this story is too important to not tell. She now wants the public to know.
Since our own struggles began with the abominable system, I have reached out anonymously and heard many horror stories of rising costs of premiums and deductibles and lowered access to appointments and care. The “Affordable” Care Act may have helped a few people, but tens of millions of Americans are still without insurance and being fined because they don’t have money to pay for insurance out of some kind of malicious poor tax.
So, all this is true, but I want to focus on our experiences with the system at LA County-USC medical center (LAC-USC).
I live about 450 miles from Los Angeles, but I have traveled to L.A. frequently to attend appointments with my sister and I have been horrified at what I witness and stressed, frustrated and appalled at the way my sister and other human beings are treated in the “death” care paradigm.
I have only been privy to what happens in the cancer (surgical and medical) departments, but there are far fewer conditions that are more frightening than cancer and where the treatment seems to make people feel worse than before they were diagnosed.
First of all, the minimum wait time for any appointment for my sister is four hours. I sit in the waiting rooms with Dede where there are never enough chairs for these desperately ill people and their caregivers. I have seen 70-year-old women with scarfs on covering their chemo-bald heads leaning against walls.
My sister has never been counseled on managing her ulcerated tumor and puts a baby diaper on it with a salve that we came up with. My sister has never been counseled on nutrition and I was, once again, appalled when a cart wheeled into the medical cancer waiting room that was selling processed snack items filled with carcinogens and soda filled with sugar, or high-fructose corn syrup.
My sister has been run from one department to the next for one test or another that haven’t occurred. My sister is a large woman with large breast and one of the breasts has a large tumor up near her chest. She needed an MRI to see if she could be enrolled in a clinical trial but her breasts didn’t fit in it. They sent her someplace else for the MRI that was supposed to have a bigger machine, but it was the same exact one.
Since my sister was diagnosed with cancer, her lump has grown from about the size of “half a tennis ball” to triple that and she hasn’t even had any treatment yet.
Since she was diagnosed with cancer, her lump has grown from about the size of “half a tennis ball” to triple that and she hasn’t even had any treatment yet: biopsies, mammograms, and other tests that twist and turn her already sick breast into shapes not meant for it.
One appointment that I was not able to make with her, she had to break down and sob to her medical oncologist that she was so sick and so worried and no one was calling her to schedule treatment or letting her know if she was in the clinical trial (they finally abandoned that idea) and after a CAT-scan and EEG, (to see if she has a strong heart), she was scheduled for her first chemo on June 15th . Aside from the wisdom and efficacy of chemo (that’s another subject), she was so relieved to finally be doing something and I was planning a trip back to L.A. to be with her for several days before and after.
A few days ago, she called me, and said that there was a cancellation and they had scheduled her for chemo at 8 the next morning. That was far too quick for me to make it to L.A., but we have heard that the first treatment usually doesn’t make a person that sick—although, it’s different for everyone.
So, my sister drove to LAC-USC (a 30-minute drive for her in clear traffic, and god only knows how long at other times) to get labs done that day to proceed with the chemo the next day.
Dede arrived at LAC-USC early and was where she needed to be, when she was told that before she received chemo, she needed to “go to the financial office.” Of course, she was confused since she was put on Medi-Cal and had been going to LAC-USC for tests and appointments for weeks at that point.
When she got to the financial office, she was told that LAC-USC “Doesn’t take her insurance.” What!?
Apparently, when one goes on Medi-Cal, he/she must pick a Medi-Cal provider and my sister was told by a social worker there on site (I was at that appointment) that she could choose LA Care or HealthNet. She chose HealthNet and the worker at financials told her that LAC-USC “does not accept HealthNet.” (Subsequently, we have found out that that’s not even true). So, she was turned away without her chemo and spent eight-hours on the phone for the rest of the day trying to straighten it out.
With so-called ObamaCare, I guess, it’s almost impossible to switch providers in mid-stream, but that point should be moot since LAC-USC “absolutely” does take HealthNet—so, my sister is making another trip to LAC-USC to try and get an “exemption” so she can receive treatment.
My question is, “What if she is turned down for that exemption?” Do they just send her home to die? When is euthanasia the next step for poor people? I have witnessed animal shelters treating stray dogs and cats better than poor people get treated at LAC-USC.
I will give credit where credit is due, though. I have seen some heroic acts from doctors and nurses (especially the surgeon assigned to her case, Dr. Kahn) who have advocated for my sister and got the wheels spinning a little faster and I appreciate that. However, absent the ideal situation of Medicare for all, “everyone in, no one out,” poor people have the exact same human right to quality healthcare as the “1%.”
These programs should be fully funded by taxing those who profit off of the illness and problems of others and re-prioritizing human needs over corporate greed. Los Angeles is a rich county in a rich state in a rich country. No one should have to struggle for care while they are also struggling for their lives. It’s inhumane.
Also, where is an office of “patient advocate?” My sister is fortunate to have people who love her and will go to bat for her, but she has needed someone inside the system to also help her (and us) navigate it.
This is only one story out of millions, but my sister Dede is also my best friend, dear auntie to my children and grandchildren, and a major force for good in the world who has chosen to live outside of the corporate life to help try and make this world a better place.
It’s personal and I wish to god that the so-called “powers that be” understood that.