Even as a clinician, my Breast Cancer Medicaid status has drastically altered my healthcare delivery and outcome, and I am not the only one.
On January 7th of this year, I had a 3D Mammogram to rule out breast cancer based on its strong history on my mother’s side.
On January 14th, I received a very apprehensive call from my nurse practitioner giving me the diagnosis of Invasive Lobular Carcinoma of the right breast. She was trite and not forthcoming with me concerning my questions regarding the diagnosis. Normally, this provider was exceedingly kind and communicated openly. I had no idea what transpired to change her attitude.
During this short, life-changing conversation, something from my provider’s tone resonated within my spirit that the common human experience with illness and disease that I was about to encounter would include an unexpected dark component.
I realize now, that the tone and hesitancy in her voice most likely conveyed her own understanding that my insurance status would compromise/complicate my outcome.
Subsequently, I have witnessed the passive, but very present, veiled negligence of the medical field to initiate timely treatment for a life-threatening illness in a Medicaid patient.
This is to a depth I had never seen as a medical professional, nor as a patient, and is illuminated in the story of the reprehensible mismanagement of my own health and life by my breast cancer providers.
Incomprehensible Delays In Treatment
Since January of this year, I’ve stood both stage-side and center stage in my experience with the struggle to have my practitioners determine exact diagnosis, proper (or lack thereof) staging, and have endured extreme delays in care, follow up appointments, and in receiving adequate and reliable test results, including the imperative-to-treatment Oncotype.
My initial appointment dates for follow-up procedures and cancer care after diagnosis were not in a timeframe supporting health and timely intervention.
Weeks went by between appointments and most diagnostics, which prevented the swift interventions needed and expected for the concentrated care and attention that newly (or any) diagnosed breast cancer patients require.
After searching for alternative care, I consulted with the breast oncology team at MD Anderson on March 9th to gain a clearer picture of my risk and staging before actually being diagnosed “enough” to decide on a double mastectomy. This was because subsequent recent results showed I had bilateral breast cancer much larger and more involved than originally suspected.
Due to the life-threatening bumbling and delays of my Austin providers explained later in this story, my surgery date was not scheduled until March 23rd, which was 74 days after the original January 14th date of confirmation of breast cancer.
Prior to having the double mastectomy on March 23rd, I investigated what the longest period recommended was between cancer diagnosis and the beginning date of treatment. It is a standard two weeks. If a woman must or chooses to wait any longer, the most time that can pass from diagnosis to beginning of treatment without survival rates greatly declining is 31 days.
This was a concern I had voiced with my providers consistently, but one that did not seem to facilitate any corrective action.
In speaking to many women I know personally who have undergone diagnosis and treatment for breast cancer, I have been informed that not one can parallel their experiences to mine as their treatments were scheduled immediately and their procedures and test results were timely.
None of those women had Medicaid for insurance coverage.
Why do I share all of this?
It is because the tragic reality of my negative experiences, and that of many others on Medicaid, is directly tied to my insurance coverage.
The Real Story: The Alarming and Life-threatening Gaps In (Cancer) Care for The Poor
Just after diagnosis, I began my cancer care as a MAP patient with the Cancer Care Collaborative at Ascension Seton hospital here in Austin, Texas.
If I had to have remained a patient there, I would be looking at a very grim outcome void of any real hope. I stood in shock after walking into the CCC office for the first time, seeing several minority women who were obviously ill, laying or hunched over the chairs. Not a one had their head up. I felt the air of hopelessness and resolution to sickness and death. I wanted out of there, immediately.
This was the place that local providers (my soon-to-be MBCC provider also) worked pro bono.
I soon learned one major source of that hopelessness. It was at the end of my appointment for that day when I went to schedule my next appointment and discovered that my next available appointment would not be for 2 more weeks and would not be with the same provider I saw that day.
Immediately, I felt unimportant and at risk for getting lost in the system. Having to stay in that position with a breast cancer diagnosis that I was informed was “most likely worse than initially thought” would have dramatically reduced my initiative and hope to live. This fateful concession is what I saw in the patients sprawled helplessly in the waiting room of the CCC.
Continuity of care is a foundational principle in healthcare. The lack of it leaves any patient, especially an oncology patient, feeling extremely disconnected, anxious, and forgotten. The truth of the matter is that vital information is missed when several providers work separately on a case and cares are not synergetic. This places the health and life of a cancer patient in danger, as there is no one regular provider to remember a particular patient’s needs and particular situation. Just reading the chart does not suffice, for any medical need, let alone that of a cancer patient.
In contrast to many women at the CCC, who waiver in the gap between Medicaid and MAP eligibility, I was approved for Medicaid. This coverage placed me just one step up from the other reality, from a completely invisible status to the status of “Medicaid recipient.”
I knew I would receive better care than that offered to the CCC patients, but I was genuinely concerned that such a serious diagnosis as breast cancer would be under-treated due to my Medicaid status.
I did not anticipate, even as an experienced nurse, how profoundly that fear would come to fruition.
The Dark Veil of “Healthcare Delivery” to The Poor
Much of the medical community leaves poor patients to infer the un-importance of their health and lives from the subpar care taken in their cases, such as the following:
- a common lack of ordered diagnostics that are normally appropriate for a diagnosis
- dangerous delays in the ordering of any diagnostics
- the nonexistence of the introduction of alternative treatments and preventative medicine to patients (ie: natural, effectual alternatives/additions to chemo, radiation for cancer care such as European Mistletoe, CBD with terpenes or just the suggestion of a keto (friendly) diet
- the pervasive lack of the followup and relaying of test results
- lack of appropriate and effective medications to manage conditions such as pain, insomnia and especially mental health diagnoses.
- dismissal of symptoms by providers resulting in chronic and irreversible conditions in patients (this now seems to a common problem for many patients)
- lack of timely referrals, if a patient is even referred out for specialty care
- the pervasive occurrence of any specialty appointments to yield any appropriate care at all, regardless of diagnosis/symptoms
My personal experiences shadow these instances:
A) Post-surgically, as I wrestled with severe pain from the double mastectomy, I was told by my plastic surgeon’s nurse, that Tylenol and a very small handful of 5mg oxycodone to last weeks, were sufficient for the pain that I was experiencing. In one of the telephone conversations I had with her, she labeled me an “outlier,” in reference to this unrelieved, incomprehensible pain that was causing severe insomnia and upper body immobility for me.
This situation then and now has prevented the natural and necessary process of rest and recovery for me.
I have since learned from several women in my community who have regular private insurance, who also underwent mastectomies, that they alternatively were given appropriate post-mastectomy pain medications such as Hydrocodone and even Dilaudid to manage their post-mastectomy pain.
B) Severe and persistent insomnia plagued me from the date of my surgery. I addressed this problem for four months before getting a referral. None of the medications I was given to “relieve” the insomnia in between were first action medications for insomnia and did not work at all. After I waited almost two more weeks for this referral (still not sleeping) I was told by the new provider I saw that I needed yet another referral to actually get to the MD who ordered effective medication for insomnia.
This was another month’s wait, without more than 20 hours, at best, of sleep, per week.
C) After surgery for breast cancer, medical protocol includes the formation of a treatment plan based on the final results of surgery, risk assessment assays, and lab results.
The Oncotype result must be in hand post-surgically, as it determines the risk factors for metastasis and recurrence of breast cancer, indicating whether chemotherapy, radiation, and hormone therapy are appropriate, or if all three are required.
By May 5th, I still had no Oncotype result and still did not have a confirmed treatment method, after surgery.
Three separate times from the original diagnosis and biopsies in early January 2021 to my surgical follow-up appointment end of March 2021, this test was “ordered,” but never done.
My breast surgeon first discovered in April that the original biopsy tissue taken by another practitioner in January was “insufficient” for processing. This important information was obviously lost in transition and not previously sought after by any of my providers, which certainly raises an eyebrow, as this information is imperative to understanding a patient’s risk of disease recurrence and the benefit of chemotherapy/radiation.
Most concerning is that the breast surgeon “forgot” to order the Oncotype from her own biopsies in February and again from the post-surgical mastectomy tissue retrieved from surgery on March 23rd. The test was neglected a third time, as outlined further in this story.
Before and after surgery, appointments with the breast cancer surgeon left me wondering after each visit what it was in her eyes, and in the hesitant way she slowly and carefully worded things, that I was not being told. She appeared to lack confidence in much of what she relayed to me regarding my original biopsies and scans. Although deemed the best breast surgeon here in Austin, I just could not shake the uneasiness in the air and the unsure nature of my changing diagnoses in our conversations.
I have conceded that my cancer care providers are indeed grossly aware of and understand that the delays in diagnosis, staging and surgery scheduling I have experienced are not normal occurrences and cannot remotely be defined as “best practice.” They know I knew to expect better as a medical professional.
However, I was continually assured that I was getting the “best care possible,” despite the staggered visit conversations containing an ever-present air of disregard, mystery, and even one of concealment.
I have long cared for Medicaid patients in all my nursing specialties. I have been a Medicaid patient before now on and off in my 30-year medical career, second to being a single mom most of my adult life.
I know how poorly Medicaid patients are treated, but this experience opened my eyes to something about the medical field that has changed my perception of care and treatment in healthcare across the board.
I have seen for the first time the concrete evidence of purposeful, pervading medical neglect, particularly in the field of oncology, towards patients with no or lesser insurance. I have witnessed and experienced for myself the total and willful lack of concern for life, my life, as opposed to others who have money and adequate insurance.
Every confusing interaction with my providers indirectly left me feeling worthless and invisible. I knew, they knew, that as a Medicaid patient, I was not getting appropriate care. Treating patients so poorly that the patients themselves resolve that they are not worth the same life-saving treatment that others receive is inconceivable.
This is how and why poor people die from the same diseases and conditions that non-poor people recover from exponentially more often than those with low incomes.
How The Poor are Socially Treated
I had a double mastectomy with 14 right side lymph nodes removed and the left side sentinel node removed in late March.
I rightfully had the expectation to receive compassion in my care, as every patient should expect, especially after major surgery.
This was not my experience.
My breast surgeon did not come to see me in the hospital after the initial procedure. She did not explain postoperatively in any detail at all what she saw in surgery. I was scheduled to leave the hospital 23 hours after surgery, with 4 drains and incomprehensible pain…pain that 5 mg Oxycodone, 300mg Gabapentin, and 1000mg Tylenol alternately do NOT manage. I forced the issue of staying three nights as I knew that was the very least amount of hospital time I could have and go home in any condition not threatening my wellbeing.
The caseworker who saw me just after my surgery encouraged the longer hospital stay until she discovered I was a Medicaid recipient. She then returned to my room and informed me if I stayed a third night, I would “have to pay for it myself.” She was no longer smiling and never came back to check on me after that statement.
Her services had been requested to help me navigate resources and counseling for the amount of personal stress I was going home to. My youngest son was admitted to drug rehab with a coinciding total mental breakdown occurring just two days prior to my surgery and I would be returning home after the mastectomy to care for my 4-year-old grandson with special needs.
I was left to manage these issues and the recovery alone.
The plastic surgeon came on my second day stay, gruff and annoyed. He also focused on informing me I was going to have to pay for the third-night stay. Following this statement, without any other information or report from his work in surgery, he turned on his heels and began walking out the door. Just as he did, he turned his head back at me and dryly stated, “Well, I think you’ll like where we’re going with this…” as if I should be excited about having to re-create my chest? Since he had informed me of nothing else regarding my care, I am only concluding that was the reference he was making.
I was stunned, insulted, and deeply hurt. I no longer cared if I ever got breasts again.
I had consistently been asking about the results of the surgery and lymph node removal from the moment I regained clarity from anesthesia.
The nurses could not tell me anything, and finally, I was informed that my two-week follow-up with the breast surgeon would give me my answers.
Apparently, I was to accept waiting another two weeks before getting any answers to my cancer status.
Upon asking about my results at the two-week post-op visit, specifically the Oncotype, my breast surgeon stared blankly at me, turned from me to her computer, and stated she would “order it immediately.”
Having lost all faith in my Austin breast team, I began preparing to transfer some of my care to MD Anderson in Houston. When requesting my records for the MDA team evaluation two weeks later, it was discovered again that the Oncotype was indeed not ordered.
To clarify for anyone who does not understand the importance of this testing, an Oncotype determines with great precision, a person’s risk of breast cancer recurrence and so is vital to treatment planning post-surgically. The lack of this test post-procedurally results in further delays in treatment for cancer, which further risks a patient’s life. I needed to know whether or not chemotherapy, radiation, and/or hormone therapy were the appropriate courses of action.
Now, four weeks post-op I had no idea what my treatment is and no idea what my risk of further disease is. This has been torment from start to finish. My staging was changed four times from January to mid-March. My prospective treatment plans were therefore changed four times and, although I received a “surgically-free of cancer” report, my visit to the associated oncologist in the same group as my breast surgeon squashed that hope with repeated vague sentences including, “Well, we can’t see everything, so we don’t really know the risk.”
A competent practitioner whose professional goal is to see all patients benefit from valid treatment options would recommend additional testing be performed (like CEA and Signatera Assay) after chemotherapy, if indicated, or after surgery to check for residual cancer DNA in the blood. These test results would further enhance proper treatment planning after adjuvant treatment methods, most often, chemotherapy.
However, the oncologist was not forthcoming with information on this life-saving diagnostic testing until I mentioned it. She hesitated, stumbled over her explanation of the tests, and seemed extremely uncomfortable. She ended the sentence with, “I’ll have to see if this testing is favorable to you and if the insurance will cover it.”
There is NO cancer patient for whom CEA and Signatera assays are not favorable.
These options should be offered to all cancer patients, regardless of insurance status, and are offered, per my research, to many other cancer patients. These diagnostics give cancer patients their cancer status (metastasis, risk of recurrence, previously undetected cancer) with almost 100% accuracy.
My providers know I am a veteran nurse, yet my years of experience and knowledge are not respected or recognized and are even contested many times because I am a patient on Medicaid.
I am eligible for Medicaid today due to having to stop my nursing career, leaving the workforce entirely, to raise my special needs grandson.
A shameful, pervasive neglect of the poor
If I were not a medical professional, I believe I would not be in any place of health right now (and I struggle daily with the ongoing effects of chemo, awaiting radiation) because I have had to fight for everything I have had done and my medical knowledge led this.
The blank stares greeting me every time over the last few months when addressing my concerns over the delays in diagnosis and treatment as a cause for my concern for metastasis, still haunt me.
With my eyes further opened to the grim reality of the outright malpractice and medical neglect shown to patients who are not wealthy or do not have “good” insurance or the ability to self-pay, I am forced to accept, indeed, that the lives of anyone who does not have either are unimportant to many providers and are not considered worthy of many providers’ time.
This truth is one I have long fought against in my own career as I advocated for my own patients, but the depth of the apathy and disregard for my life and the lives that sit in those seats at the Cancer Care Collaborative is outright criminal and inhumane.
Life itself, humanity, is not valuable second to wealth, education, or social status. We are valuable as human beings because we are so greatly valued by our Creator.
We are valued by our loved ones who do not want us to die untimely deaths or due to another’s negligence and apathy. No one wants to die or have a loved one die because medical providers do not value the patient’s life because they are a Medicaid recipient or have no insurance.
Is There A True Resolution?
What is the resolve to this profoundly serious mindset in the medical community…not just in Oncology, but in all areas of the medical field?
Can you teach another human being who does not hold value for every life that all life is valuable? Should doctors, on the very premise of their calling and job description, value one set of lives over another?
Where did the alternate idea of providing more and advanced care to fully insured/wealthy originate? Providers do not make much from Medicaid, so most recipients of Medicaid will not be a priority to these providers at all.
Does the lure or lack of exorbitant money-making really taint providers’ decisions and treatment of patients?
Despite the many years I worked to respect and advocate for my poor patients, I am still flabbergasted at the permeating negative attitude in healthcare toward the poor.
As a nurse, I have had many patients on Medicaid who were war veterans, college professors, travelling dance instructors, former nurses, scientists, teachers, and many other professions as well as many others with no profession. They were all valuable lives.
The only solution I advocate for that will change the profit-driven, discrimination-based lack of care in the American healthcare field is nationalized healthcare, a system in which all human beings are treated equally, which would eliminate insurance companies making the decisions for medical diagnosis and treatment. I would not ask my car insurance salesman to dictate my automobile repair, as he is not a mechanic.
I experienced nationalized healthcare in England as a child when my family lived there in the 1970s. We had no problems obtaining care nor did we have to wait for care.
The privatization of our American healthcare system has created and fostered much illness, both acute and chronic, lack of access to medications, treatment modalities, and procedures based on patient income.
If lucrative money-making is at the helm and priority of providers’ decisions, and not the preservation of health and life, then, at one time or another, every person who seeks healthcare will have their health and life compromised as we are all numbers, specifically if we are poor, but when the combination of money, Big Pharma and profit is the driver…none of our lives are really safe.
