Megan Williamson

Megan Williamson talks about the differences in care she received with a PPO versus Medicare and Medicaid. She also talks about the constant profiling she receives when she visits doctors or hospitals. Her experiences have left a traumatic mark in how she approaches the healthcare system.

“See, I don’t– I don’t know how I could, how I could even put it, because it– I feel like no matter what I say and no matter what I do, or how I say it, or how I do it, it’ll never make a difference in the eyes of the people that are making money off of it. Because even if they do watch this right now, it could be somebody that, like me, who has compassion? That empathy and everything else. Or it could be somebody that, [tsk] just has a high rank and enjoys the money. So. I mean, my take into it is you really need to have a more empathetic heart to be in that field. Because if you’re just in that field because you feel like it’s– you get the most out of it? Financially? Shouldn’t be there. Because that’s not what it’s for.”
— Megan Williamson

ANNOTATIONS

1. Medical Referrals - Referrals are one significant part of primary care services, and they are supposed to be efficient, necessary, accurate, and involve sufficient communication between physicians, specialists, and patients. However, the process of referrals can be problematic and can delay or impede treatments. Research shows that primary health providers may not have efficient or sufficient communication with the specialists they are referring, and thus cause delays in treatment or can refer patients to the inappropriate specialist. For patients with Medicaid insurance, they may encounter more difficulties with referrals and access to specialty care than those with private insurance coverage. According to a 2017 survey held by community health centers (CHC) from states that enacted Medicaid expansion, more than half CHCs reported that many specialists in various fields are reluctant to accept referrals of new Medicaid patients. Many participants believed that several reasons such as low Medicaid payment rates to specialists, patients’ socioeconomic status, and appointment availability can influence the acceptance of referrals of Medicaid patients. Over half of the respondents said long distance or time patients have to take to see specialists can also be one factor that causes a lack of access to specialty care, because Medicaid patients have less choice of physicians in the Medicaid network. Children who have Medicaid insurance can also face a similar situation when seeking specialty care. According to a 2010 national survey from the United States Government Accountability Office, physicians who sent referrals for children in Medicaid are three times less likely to transfer those children to specialist successfully than they are with children with private insurance.
2. Under Diagnosis of ADHD - Attention-Deficit Hyperactivity Disorder (ADHD) is a condition that can be easily under-diagnosed because there are no tests specifically for ADHD and patients can have a wide range of symptoms. A thorough examination from a medical professional is required to confirm the diagnosis. Research shows that male patients are more likely to have externalizing symptoms such as hyperactivity, impulsivity, or aggressive behaviors, while female patients are more likely to have internalizing disorders such as inattention or mental issues that are hard to recognize from external observation. Therefore, many female patients have been ignored and left untreated. Some female patients may receive diagnosis of other disorders that can co-occur with ADHD and therefore delay the diagnosis and treatment for ADHD. Such under-diagnosis can result in severe consequences, especially if the patient has not been diagnosed since childhood. Lack of treatment is one of the most serious consequences and it can lead to damage to people’s physical and mental health and affect their daily lives. For instance, there is a strong correlation between ADHD and substance or alcohol abuse, and some ADHD patients may also develop substance use disorders and vice versa. Without receiving necessary treatment, adult patients can develop more serious co-occurring symptoms that can cause patients to have mental, social, financial, and academic issues in their daily lives. They may be unable to achieve academic success or complete job content because of their condition, potentially causing financial hardship, which can further prevent them from seeking or obtaining effective treatment. Delay of diagnosis and treatment can also affect patients’ life expectancy. A study of mortality rates of ADHD populations finds that the mortality rate ratio of people who are diagnosed with ADHD after the age of 17 are nearly seven times higher than that of those being diagnosed in early childhood.
3. Body Dissatisfaction, Body Image, Mental Health - Changes in body shape and weight always happen during pregnancy. Because society's monotonous aesthetic standard for women has favored women's bodies that are slim, many women express dissatisfaction with their bodies and take great effort on losing weight after childbirth. Psychological changes during pregancy, which can include depression, anxiety, and the possibility of low self-esteem during pregnancy, can also cause concern about appearance and result in negative judgments toward women’s body shapes and weight. Some studies suggest that women experience lower levels of body appreciation in the early stages of pregnancy and higher levels in the middle and post-stages of pregnancy. However, body appreciation levels decreased after giving birth. Many women suffer from the anxiety of body shape in the postpartum phase, which can increase the likelihood of postpartum depression (PPD). A recent study conducted by Riesco-González et al. showed that women who have body dissatisfaction before and during pregnancy are more likely to have PPD after childbirth.
4. Access to Medicare, Medicaid Acceptance - According to a 2019 survey on national physician acceptance of new Medicaid patients held by Medicaid and CHIP Payment and Access Commission (MACPAC), healthcare providers are less likely to accept Medicaid patients than Medicare patients and people with private insurance, whether the providers are physicians in general or specialists. One significant factor that keeps medical practitioners from seeing new Medicaid patients is the low reimbursement rate of Medicaid payments. New Jersey has been one of the states which pay physicians the lowest amount of payments for a Medicaid patient’s visit. In 2013, only 38.7% of doctors in NJ accepted new Medicaid patients, according to data from the U.S. Centers for Disease Control and Prevention. The Affordable Care Act and Medicaid expansion didn’t do much to help change this situation for Medicaid patients as the MACPAC survey showed. A 2017 audit revealed that the reports published by New Jersey’s division of Medical Assistance and Health Services (DMHAS) contained several mistakes that could impede Medicaid beneficiaries’ access to healthcare services. The reports from DMHAS provided lists of physicians and specialists that accept Medicaid patients, but illumated the fact that some physicians had different capacity than reported and almost all the listed dentists could not be found. A quarter of specialty physicians in five NJ counties were located at different places than the provided locations, and of the accurately listed providers, more than a tenth did not accept Medicaid patients any longer. In a 2019 survey that studied some of the factors that Michigan physicians consider when deciding whether they will accept new Medicaid patients or not, researchers listed several conditions: the amount of reimbursement, capacity of a clinic to receive any new patient, phychosocial needs and disease burden of of Medicaid patients. Most healthcare providers participated in the survey reported most attention to first three factors. Physicians who valued the overall capacity to receive any new patients or the reimbursement amount more than other factors were more likely to decline new Medicaid patients. Other physicians who were concerned more about patients’ circumstances were more likely to accept Medicaid patients. Still, patients with other insurance like Medicare or private insurance are more likely to be accepted by physicians and specialists than Medicaid patients. While specific to Michigan, these factors illuminate the decision making process for accepting new Medicaid patients on a state-wide level.
5. Substance Use Disorders, Substance Use Recovery, Health Care Bias - The problematic attitude of healthcare professionals towards patients with substance use disorders is an issue that has been studied worldwide. An article reviewed relevant studies on western healthcare practitioners’ attitudes between 2000 and 2011 and found that, in general, healthcare practitioners have negative attitudes toward patients with substance use disorders. Some nurses felt less motivated to take care of the patient, whereas other healthcare providers believed that the recovery of these patients was hopeless and patients were irresponsible. Substance abuse is often been perceived as morally wrong and a result of lack of self-control. A 2011 survey found that many Jordanian nurses had stigmatizing attitudes and biased interpretations of patients’ behaviors, as if the patients would fake symptoms to get drugs. Many researchers believe that the stigmatizing attitude of healthcare professionals can cause negative effects on recovery and ongoing treatment of patients with substance use disorders, as well as on patients’ self-efficacy and self-esteem. Patients may have skeptical feelings toward the treatment they receive if they think professionals are implicitly judging them and their health concerns. They can be less likely to complete the treatment or become unwilling to cooperate with healthcare providers. Patients may receive inappropriate care from healthcare professionals, such as experiencing inefficient intake and care, or avoidant tendencies from their providers.

Transcript: “The nurse came in and she was like, ‘Um,’ because I refused the Percocet. I was only taking the Motrin. She was like, ‘I’m surprised.’ I said, ‘Surprised? Of what?’ And she said, ‘you know, that you didn’t take any pain medication.’ I said, ‘Why is that?’ She said, ‘Well, you know, you have a history of it.’ I said, ‘So that’s why? Why are you offering it to me? If I’ve already refused it?’ Now, if I wasn’t strong in my recovery in that moment, I could have relapsed! I could have relapsed. If you looked up my past, and you looked at my chart, you could see that I was a recovering addict. So, why would you offer me a Percocet? And ask me why I wasn’t taking it? Obviously, I didn’t need it. Obviously, I didn’t want it. That’s the first issue. I’m an addict in recovery. So, when I go to places like that, you’re pushing things on me that I shouldn’t be taking because I'm a so– I feel like you’re doing it because, it’s, like, you’re like, setting me up for failure!”

Learn More: Leonieke van Boekel et al., “Stigma among Health Professionals toward Patients with Substance Use Disorders and Its Consequences for Healthcare Delivery: Systematic Review,” Drug and Alcohol Dependence 131, no. 2013 (February 18, 2013): 23–35.

Learn More [2]: Robin Bartlett et al., “Harm Reduction: Compassionate Care Of Persons with Addictions,” Medsurg Nursing : Official Journal of the Academy of Medical-Surgical Nurses 22, no. 6 (June 25, 2014): 349–58.

Learn More [3]: Matthew Tierney, “Improving Nurses’ Attitudes toward Patients with Substance Use Disorders,” American Nurse (blog), April 4, 2017.

6. Patient Neglect - In a systematic literature review of worldwide research on patient neglect, Reader and Gillespie suggest two kinds of patient neglect: procedure neglect (the failure of a care giver to meet professional and regulatory standards that the medical institution requires them to follow) and caring neglect (the failure of a care giver to let patients, or the patient’s family, feel being taken care of properly without violating the procedure). In Williamson’s situation, the healthcare providers ignored her hygiene conditions, which could be procedure neglect. They also delayed her requests and did not provide help until she signed herself out of the hospital, which could be identified as caring neglect. Some actions may not violate specific regulations or cause direct harm to the patient, but can lead to mistrust against the care giver or the healthcare system and leave the patient with the feeling of being undignified. Patients who are treated with ignorance by nurses and other care practitioners may feel a loss of dignity, resulting in psychological and physical harm during the treatment. Whether the neglect is caused by a systematic mistake or intentional or unintentional ignorance from the care provider, patients are able to perceive this neglect and suffer from it because, for patients, the harm of neglect is subjective. As the subjectivity of caring neglect lacks conceptual and specific criteria, it can also lead to controversy concerning the authenticity of patient neglect in each case. Nevertheless, understanding how caring neglect can be a starting point that leads to procedure neglect, and actual harm to the patient, is important.
7. Medical Professionalism, Health Care Bias - While describing her relationship with the medical industry, Megan expressed her expectations of doctors and other medical professionals; they should care about every patient regardless of their insurance status, and follow what the Hippocratic Oath suggests. As Project Professionalism published by American Board of Internal Medicine states, professionalism, “aspires to altruism, accountability, excellence, duty, service, honor, integrity, and respect for others.” The discourse of medical ethics is often brought up partially because of the decrease of public reputation of doctors and healthcare system. Physicians who maintain medical professionalism are expected to be altruistic and willing to always put patients’ benefits and interests first. When the interests of the patient and the interests of other parties, such as the hospital that the physician works at conflict, physicians must promise that the interests of the patient remain priority. Physicians should express medical ethics and values including empathy, integrity, and caring, and the relationship between doctors and patients should be fiduciary and sincere. Physicians should serve for the needs of the society and community. It is their responsibility to provide healthcare services to community members regardless of their socioeconomic statuses or insurance statuses and pay attention to the population that may not receive needed care. Yet, from Megan's narrative, it appears that many doctors today are not as altruistic as they should be to meet the aspirations of medical professionalism. Megan's experiences with doctos led her to believe that they care more about patients' health insurance and affordability of medical costs, leaving many people to struggle to find access to appropriate health care.
8. Empathy in Healthcare - In 1998, the Association Of American Medical Colleges published the guidelines of medical schools suggesting that medical professionals must be altruistic and have empathy for patients, and that having empathy helps maintain good doctor-patient relationships and quality of care. Empathy allows for a physician to understand a patient's concerns and perspectives, and can help with communication during treatment. Research shows that patients who have a compassionate physician are more likely to report higher satisfaction towards their treatment. Seeing compassionate physicians can also decrease patients’ anxiety and improve the effectiveness of their communication. Patients feel support and understanding from their physicians are more actively involved in the communication and treatment and are more likely to understand and trust their physicians, resulting in better clinical outcomes which can lead to fewer medical problems and claims. However, many doctors may not be able to maintain empathy. Some research shows that medical students are more likely to have decreased level of empathy during the training process. Some healthcare practitioners started losing empathy after they began clinical practice. Some researchers believe that many doctors do not practice empathy because of reasons such as time pressure and doubts about effectiveness of empathy.
9. Overtreatment - In 2010, the Institute of Medicine suggested that the U.S. healthcare system wastes $210 billion on unnecessary treatment each year. A 2014 survey on physicians’ perception of overtreatment shows that a median number of physicians believed that a fifth of overall health care, more than a fifth of prescription drugs, nearly a quarter of tests, and over one tenth surgeries were all needless. Profit is not the most significant factor of overtreatment, but over seventy percent of participants believed that physicians are more likely to overtreat patients if physicians can benefit from it. Researchers found that physicians’ concerns of malpractice, patients’ anxieties or requirements, and lack of access to previous medical records were the top three reasons that led to unnecessary treatment. However, another survey shows that only less than a twentieth of patients who were hurt by medical neglect file a lawsuit, and only half of them can receive compensation. While many physicians are afraid of being sued for malpractice, and thus provide unnecessary treatment, patients who are overtreated can be harmed from those procedures, test, and drugs. The Cedars-Sinai Medical Center in Los Angeles collected and analyzed the statistics of more than 25,000 patients from 2013 to 2016, realizing that patients who received treatment they did not need are more likely to readmit or have complications than those who received proper care. The complications and longer period of hospitalization can cost more for the hospital. Overtreatment can not only increase huge amounts of costs, but can also cause harm to patients. In either way the profit of unnecessary treatment is much less than the costs for both hospitals and patients.

Transcript: “Like, or I’ll go in for the–  the– happened the one time I went, I had the same doctor, because the doctor took both insurances. And I went to the doctor. And this was when I was, I was overweight when I was a child. And I went to the same doctor. And they put me on like a nutrition plan, sent me to a nutritionist, did all that. Never wanted to do surgery. I got Medicaid and it was right around the time Medicaid started covering the surgery. And right away they want to send me for surgery. I was, like, twenty pounds overweight. I was like, ‘Um, no,’ [laughs] ‘I don’t, I don’t need that surgery.’ You know? But, instead, they would send me for, like, uh, what did they want? ‘Cause my grandfather’s insurance covered, like, hypnosis? Or something like that? So they wanted to send me for, like, hypnosis or something like, uh, what was it. Acupuncture. It covered acupuncture, things like that, my grandfather’s insurance covered. And those were the things that they were sending me for. Not procedures, ‘cause they get more money out of me going for acupuncture and then, like, because now these doctors are referring to me for these people and they’re overcharging my insurance, and then I have to pay co-pay on top of it.”

Learn More: Heather Lyu et al., “Overtreatment in the United States,” PLoS ONE 12, no. 9 (September 6, 2017).

Learn More [2]: Jacqueline LaPointe, “Driven by Fee-For-Service, Docs Say Up to 30% of Care Unnecessary,” RevCycleIntelligence, September 15, 2017.

Learn More [3]: Chad Terhune, “Putting a Lid on Waste: Needless Medical Tests Not Only Cost $200B—They Can Do Harm,” Fierce Healthcare, May 22, 2017.

10. Health Care, Homelessness - Due to unstable residency and lack of daily supplies such as food and clothing, homeless people are more vulnerable to physical and mental illnesses. A 2014 study on the health of those experiencing homelessness in high-income countries claims that the homeless population can be facing higher risks of substance and alcohol abuse, contagious diseases, and mental disorders. More recently, the Centers for Disease Control and Prevention (CDC) also suggests that those experiencing homelessness are more likely to have acute symptoms from the coronavirus disease because of poor medical resources or old age. While some people who are experiencing homelessness and have Medicaid can be treated unfairly by healthcare providers who have biased attitudes toward the homeless population, those who do not have insurance may struggle with less access to primary care services because of costs. Other barriers such as inconvenient transportation and insufficient appointment spots also impede healthcare conditions. As a result, those experiencing homelessness tend to utilize the emergency department (ED) much more frequently than nonhomeless individuals. According to data from the CDC, between 2015 and 2018 the national rate of ED visits of people experiencing homelessness was nearly five times higher than that of nonhomeless people. One reason for this is due to the delay of treatment of minor symptons, which then develop into acute medical conditions that need emergent care. In addition, homeless people may not receive proper treatment and services during hospitalization. Similarly, those who are admitted to the ED may be quickly discharged because they do not feel like being treated appropriately, leading to high possibilities of readmission.

Transcript: “And there was a lady who had come there from the hospital. She was ment– you could tell she was mentally disabled. Um. She was homeless. She had no shoes. I gave her a pair of shoes. I gave her food. Um. You know, I did whatever I could to help her while I was there. She couldn’t pay anymore, so they kicked her out. I called the ambulance. ‘Somebody’s gotta help her, she’s mentally disabled.’ They left her there. On Route 1. In Edison. The police left her there, the ambulance left her there. So who are you supposed to call for help? Because after that, I don’t know. [pause] And they didn’t help her. They left her on a busy highway, mentally disabled. So, after that, I wouldn’t call an ambulance if somebody was dyin’ on the side of the road. I would try and save them myself.”

Learn More: Seena Fazel, John R Geddes, and Margot Kushel, “The Health of Homeless People in High-Income Countries: Descriptive Epidemiology, Health Consequences, and Clinical and Policy Recommendations,” Lancet (London, England) 384, no. 9953 (October 25, 2014): 1529–40.

Learn More [2]: CDC, “QuickStats: Rate of Emergency Department (ED) Visits, by Homeless Status and Geographic Region — National Hospital Ambulatory Medical Care Survey, United States, 2015–2018,” Morbidity and Mortality Weekly Report 69 (December 18, 2020).

Learn More [3]: Rishi K. Wadhera et al., “Disparities in Care and Mortality Among Homeless Adults Hospitalized for Cardiovascular Conditions,” JAMA Internal Medicine 180, no. 3 (November 18, 2019): 357–66.

Learn More [4]: Atsushi Miyawaki et al., “Hospital Readmission and Emergency Department Revisits of Homeless Patients Treated at Homeless-Serving Hospitals in the USA: Observational Study,” Journal of General Internal Medicine 35, no. 9 (July 14, 2020): 2560–68.

Learn More [5]: CDC, “Interim Guidance on People Experienceing Unsheltered Homelessness,” Centers for Disease Control and Prevention, February 10, 2022.

TRANSCRIPT

Interview conducted by Jody Wood

New Brunswick, New Jersey

October 2, 2021

Transcription by Hannah M’Lynn

Annotations by Yingtong Li

[00:00:00]

And I’m just gonna ask you, if you could just walk me through some of your experiences with health care and also, you can really just look right at me and kind of—

[overlapping] Okay.

Ignore the camera.

Okay.

But yeah, just tell me, kind of, some of your experiences. 

Uh. Well, like I was explaining, when I was a kid, my– both of my parents were– they were married, but they were both addicts. And we didn’t have much. Um, we were on food stamps, stuff like that. Medicaid. Um. I never– when I was younger, um, my mom dealt with all, like, the doctors and stuff like that. I never really, you know, got into, you know, my shots, stuff like that, checkups. [deep breath] When my mother passed away, my grandparents adopted me. Now, my grandparents were wealthy. Um, my grandfather was a long shoreman. Had awesome insurance, health insurance provided by his job. Um, when I was with my parents, I had Medicaid. Now, when I moved with my grandparents, the difference in healthcare? Was. [pause] Unbelievable. I went from going to clinics, clinic settings, having to wait hours with my parents to walking in a half hour, I’m in and out. That was the big difference. So I always wanted to go to all these doctors, like, when I got with my grandparents. Um, so then I started getting the right healthcare. Um. But! By that time, mentally I was already, like, screwed up? So, it didn’t mean anything. Um, the only time it really meant anything was when I was losing it, when I was having my daughter. So, by that time, I was a teenager and I didn’t realize that the healthcare that I needed was right in front of me, because I had that insurance. And I never utilized it. So now, I have Medicaid. I’ve, you know, on welfare. I guess you would say “low-income”. Um, greatly affected by this pandemic, like, loss of job, housing, um. Health care! [chuckles] Everything! So now I’m back to Medicaid and that’s along with my children. Um, so. [sigh] When I had my grandfather’s healthcare, I had my daughter, which sent me to Riverview Medical Center. And I had my daughter when I was 20, I was 19 turning 20. And, after I had her, the next day, I no longer had my grandfather’s insurance. No longer covered me once I had my own dependent. And I wasn’t goin’ to school. So, I had to resource. I had to use resources that I can afford.

[00:03:00]

At that time, I was on disability. Um, and I had Medicare and Medicaid. My daughter only had Medicaid. The difference between Medicare and Medicaid is huge. Huge. And I found that out when I lost my disability. And I lost my disability when I was in a long-term facility. They said I was no longer disabled, mentally. I don’t know how that happened, because I’m still suffering. Um. But it happened. And I lost Medicare. And had to go back down to Medicaid, Family Care. New Jersey Family Care. Oh my God, the difference! Again, I’m back to havin’ to go to free clinics and goin’ to doctors’ appointments, they don’t accept my insurance, I have to go to this doctor, and then I have to get a referral and go to this doctor, and then I have to get a referral from that doctor to go to this doctor. [deep breath] And that’s hectic, when you’re a single mother of two. And you’re constantly, you don’t have money. And you’re traveling to far-off appointments because that’s the only doctor that takes the insurance. And they don’t get the healthcare that I was provided when I was living with my grandparents at all. And it’s horrible. Like, I’m going through that with my son right now. He’s havin’ a speech problem. I can’t find an amazing doctor on Medicaid. It’s impossible. So. Here goes the whole– [tsk] I guess you, I don’t even know how. It’s like a recur– a revolving door with people who are– that have to ask for help and weren’t brought up as– [pause] as great as others, you know? Um. Unfortunately, that’s– we’re in poverty. Um. And I went from having my daughter to nice, nice here, you can have anything you want, nice view of the ocean, to having my son six years later and barely even getting treatment. ‘Cause I had to sit in a clinic for three hours, pregnant, big, gaining weight, ah! Like, a thousand people around me, like, a thousand kids running around me, like. And you wonder why so many people are getting sick, because it’s so overcrowded when you’re goin’ to these places, too. The difference in doctors that take Medicaid from, even Medicare, is unbelievable. 

[Annotation 1]

[00:06:00]

Like I’ll walk– if I walk into a doctor– when I walked into doctor’s offices when I had Medicare and my grandfather’s insurance? It was just so easy and it was not hectic and it wasn’t, “Ugh, oh, I don’t wanna go to the doctor today,” you know, and I’ll reschedule my appointment. No! You just go, get it over with. They do what they have to do, I found out what’s wrong and that was it. Medicaid, you have to go to a thousand different doctors before you can find out what’s wrong. And that’s even if they take it. 

Why do you have to go to so many doctors? Is it because, um, the doctor’s are just, like– [overlapping, inaudible]

[tsk] [overlapping] You have to go, well. It starts off with your primary care physician. Like, that’s your main doctor on your card, your HMO. So you have your– your primary care physician. Your primary care physician has to diagnose you, and then once they diagnose you, they can send you out to specialists. Like, you can’t– with Medicare I can just call a specialist up. Like, say I have a problem with my stomach. I can call a gastroenterologist and be like, “Alright, I have Medicare, they take it, I can just go.” I don’t need a referral. So, no matter what, you have to see at least two doctors before you get the care that you need. And that’s after you search for one that takes whatever HMO that Medicaid assigns you to. So, it’s. I mean. I’ve been in hospitals where I had Medicare and got amazing treatment. I’ve been in hospitals where I’ve just had New Jersey Family Care, Medicaid. And I don’t even get a, “Can I talk to the doctor?” I don’t even talk to the doctor the whole time I’m there. Which has cost me to sign out AMA multiple times. Because I didn’t feel like I was getting the treatment I deserve. 

You filled out a what?

Um, Against Medical Advice? I– they make you sign out against medical advice if they’re not going to let you go. So, I’ll– I’ll– Explain one– one time. Um. I was in, uh, I forget, Bayshore Community Hospital. I was there with, um, my significant other at the time. And I kind of, like, broke down. I had a substance abuse problem at the time. And I broke down in the emergency room and I was like “You know what? I don’t– I don’t wanna do this anymore. Is there anybody here that can help me?” Instead of getting somebody that can help me, they forced me to commit myself. So, it was either, I signed myself into psychiatric treatment, or they were gonna commit me anyway. So, I just signed myself in. Well, when I got there, they treated me like. I don’t– I hate using this term but they treated me like I was some kind of junkie? Instead of somebody that need mental help. Now, I was in the same treatment facility when I had my grandfather’s insurance. And they treated me like I needed mental help, not a substance abuse. 

[00:09:27]

So there was a huge difference. It was basically, like, I felt like I was being profiled because of the type of insurance I had, or had to have. And that was– that was not, it wasn’t right. I walked out of there. I didn’t. [sigh] When I was there, they didn’t even provide me with pads. I had to wear the same two gowns. For the whole, I think I was there for five days. They were dirty. I had blood on them. I was going through withdrawal. They weren’t giving me anything, making me any more comfortable. And when I went there on my grandfather’s insurance, I felt great! [laughs] You couldn’t tell me that that was– you couldn’t tell me anything bad about that hospital. And they sent me, both times I was in Riverview Medical Center. Same doctor. 

Can you– I– I know it’s kind of personal, but can you also say that you were menstruating and, like, kind of illustrate that? Because I feel like that’s such a visceral story, it’s like. I’m sitting here menstruating and I don’t have pads! And I’m just, like, in a hospital, in the same hospital.

Yeah, I’d– I’d– several times a day I’d asked for pads, or– or something, “Is there like a–.” ‘Cause I didn’t even have underwear or anything. They put me right in there with everything that I had. And at that time, I, again. I had a drug issue. I had a substance abuse problem. Um. And– Anything I asked for it’s, “Okay, we’ll get some. We’ll come, we’ll come get you when we have it. We’ll come get you when we have it. We’ll talk to the doctor and we’ll let you know.” Well, rest assured, five days later, I signed myself out against medical advice because nobody came to see me five days later. I was done menstruating. I was done, withdrawn. And now I have mental issues that are arising. So, if you’re not gonna help me with that, what am I here for? That’s how I feel.

[Annotation 6]

Can you talk a little bit about, um, just the toll that that takes? To be treated like that in a hospital? The revolving door feeling at the emotional level?

[00:12:00]

[pause] It’s. [pause] I can’t say it’s not traumatizing. It is traumatizing. Because, even right now, I suffer from several mental illnesses. I have bipolar depression, PTSD. Um, generalized and socialized anxiety disorder. Um. ADHD. I just– I’m 37 years old and just found out three years ago that I have it. Um. So, for 34 years I was misdiagnosed. And, it could have been– and I feel like, if I would have gotten better treatment, even when I was a child. These could have been caught early onset and, maybe? I wouldn’t have been so distraught my whole life. Because I always felt like I didn’t ever belong anywhere. And that was what my mental illness did. So, I was always obese. With Medicaid, you can get the, the gastro-bypass surgery, but they won’t cover the. [tsk] What is it called? I guess they consider it plastic surgery, where your skin hangs and stuff like that. And that’s not covered, you have to pay for that. But if I were to got it with my grandfather’s insurance, everything would have been covered. I didn’t gain weight until after I had my daughter. So, I was obese after I lost my grandfather’s insurance, and that’s when I found out. Um. So, I just stayed obese. I’d rather be big and firm! [laughs] Than skinny and loose, you know. That’s just how it, I thought of it. So, I had to make a decision to stay overweight and cause even more health problems for myself. And I’ve always had an issue with the way I’ve looked. That’s another part of my mental disorder. So, that always stuck in my mind. So, if I wasn’t either, misdiagnosed or mistreated or, when I was younger. Because my mom did try to, um, you know, put– she always knew something was wrong? But she sent me to these, the psychologists or a psychiatrist or groups or whatever she sent me to, just. I never got any type of relief. Um, when I went with, a couple years later, and I lived with my grandparents, I did start to see some relief? Um, but by that time, my mother had passed away, my father had passed away. [sniff] I was already on my way.

[Annotation 2]

[Annotation 3]

[00:15:07]

Um. So, I didn’t start to really seek help until after I had my daughter, which I was already 20 years old. So by that time, I was desperately struggling mentally. Um, and someone that struggles with mental disorders the way I do? It’s not nice when you go into a place and you feel– you feel like something’s wrong with you. When somebody– when you go to somebody for help, and they make you feel like something’s wrong with you, that traumatizes me. So, when I Walk into these mental health settings or these hospitals and I see somebody else getting fantastic treatment, literally a curtain away. And then they come over to me and I ask a question, and they say “Oh, the doctor will be right in.” That’s a problem. 

Because they don’t really mean that? They don’t really mean the doctor’s coming?

I’ve been in so many different emergency rooms for so many different reasons! Um, and I’m either in and out with the least treatment that they can give me? And then, when they give you—and this is another thing that is an issue as well—when the hospitals give you your discharge papers, they put certain, I guess, physicians to follow up with? Which, those are the physicians that you should follow up with because those are affiliated with that hospital, and that’s where you got your treatment from. They’re not– most of the time they’re not doctors that take Medicaid or the HMO that I’m on. So, I think that’s another thing that hospitals should look into as well. Because that can be very frustrating, especially for somebody that has a mental disorder. When you call a doctor and they say, “Oh,” you know, “they– we don’t take your insurance.” After you just seeked help from one of the affiliating hospitals that they’re affiliated with. So, I think, healthcare physicians– and I know they’re very busy and we’re– they’re shorthanded and there’s a lot going on in the medical field. But you took an oath for that patient. So, even if it’s overcrowded and you’re overworked and anything like that. You should always take into consideration that certain people have certain health insurances, and certain doctors should be put on certain people’s discharge papers. 

[Annotation 4]

[Annotation 7]

[00:18:04]

That seems like a no-brainer. I mean, it’s–

But they don’t do that. They don’t do it. And a lot– and I can tell you, a lot of times, I followed up with the physicians on the discharge reports? And I never went to seek the care afterwards because none of them took my insurance when I called. Or they used to and they don’t anymore. So, that is a huge problem. Especially for me.

Yeah, I was gonna ask! Because, like, what kind of toll does that take on you, when you can’t– when you’re told to take– to follow up and you can’t. You can’t get the care that you need. What kind of toll does that take on you? What– what effect does it have?

It’s, I’d say mentally, physically, emotionally. Um, it’s a huge toll! Because now, I’m aggravated. Nobody takes my insurance. I need help and I'm not gonna get it. There's something mentally and physically wrong. I’m not seeking the aftercare treatment that I’m supposed to be. And, it could all have been something as little as two seconds of a click of a button.

Can you talk a little bit about, um, ‘cause basically there’s this kind of– I’m hearing that you’re talking about a neglect that has happened before you had insurance and then, you know, your Medicare, your Medicaid right now. But then you also talked about that, like, maybe how the staff treat you? And, like, the approach, if there’s any kind of attitude–

[laughs]

Or difference in that?

Um, I’ve been, and I must say– I’m gonna profile myself when I say this. [sniff] Um, a drug addict on Medicaid. Depending on the type of facility, depending on the type of area? Um. And, even depending on the type of person that’s dealing with people. You don’t get a lot of people that are nice. Or compassionate. Or empathetic! Because they have no idea how it is to be like that. [pause] So. The treatment some people give is not nice at all. And, like I said, a lot of people take an oath when they go in the medical field. It’s called a Hippocratic Oath for a reason. You’re not supposed to be hypocritical toward anybody. And they do it.

[00:21:03]

They definitely do it. Now, if I was a cash paying patient? [pause] Or a person with, say, a PPO or a non-government insurance? They need to keep them there. So they’re gonna be extra nice.

Yeah. Has that happened to you, too? Where, when you did have good insurance, were you, like?

Oh, yeah!

Kept there, or like, uh, told that you needed different procedures that you actually really didn’t need?

Yeah! Absolutely!

Can you talk a little bit about that?

Yeah. When I had, um, not so much Medicare, ‘cause Medicare will deny a lot of things. When I had my grandfather’s insurance, it was Signet. I had a Signet, it was PPO. Um, you have a co-pay. No matter where you go, it’s a co-pay. So. I feel like, any time you have to pay any type of cash? Or, if there’s a co-pay or you have to pay a certain amount out of your pocket, and they know they’re gonna get that money? They will be extra nice and make sure you stay at that office. Or make sure you get a procedure that’s not really supposed to get done. And even with Med– like, and I’ve– and I’ve witnessed this with Medicaid, too. Where they know Medicaid will cover it, so they’ll send you for that procedure. [pause] That doesn’t even make sense, I didn’t– I wasn’t even in for that. Know what I mean? Like, or I’ll go in for the–  the– happened the one time I went, I had the same doctor, because the doctor took both insurances. And I went to the doctor. And this was when I was, I was overweight when I was a child. And I went to the same doctor. And they put me on like a nutrition plan, sent me to a nutritionist, did all that. Never wanted to do surgery. I got Medicaid and it was right around the time Medicaid started covering the surgery. And right away they want to send me for surgery. I was, like, twenty pounds overweight. I was like, “Um, no,” [laughs] “I don’t, I don’t need that surgery.” You know? But, instead, they would send me for, like, uh, what did they want? ‘Cause my grandfather’s insurance covered, like, hypnosis? Or something like that? So they wanted to send me for, like, hypnosis or something like, uh, what was it. Acupuncture. It covered acupuncture, things like that, my grandfather’s insurance covered. And those were the things that they were sending me for. Not procedures, ‘cause they get more money out of me going for acupuncture and then, like, because now these doctors are referring to me for these people and they’re overcharging my insurance, and then I have to pay co-pay on top of it. [deep breath] 

[Annotation 9]

[00:24:14]

And, then I got Medicaid and just. “Alright, get surgery.” Because there’s no nutritionist that took Medicaid from my HMO. That’s the only way they can make money out of it, was to basically chop my stomach out. I don’t feel comfortable with that, I don’t. So. For the last, [sigh] I wanna say, a good seven years of my life I’ve struggled with weight problems, heart problems. Um, even, like I– I have a problem with, um, edema. They have never sent me. Like, my– every time I go to my PCP, she’ll just prescribe new medication. Medicaid covers all medications. There’s not a medication that it doesn’t. And then when it doesn’t, they just change it to a different medication that is covered. So. [sniff] Any time I’ve ever gone to my PCP, she just prescribes new medication. And who do I see every time I’m there? Somebody trying to have that office prescribe a medication for me. What are there– I don’t even know what they call, they’re the, um, who are the people who come into the doctor’s offices from like, the pharmaceutical companies?

Yeah, I know. Like a pharmacy rep, or something? [overlapping, inaudible]

Yeah. A pharmacy rep. They’re always in my PCP’s office!

Oh, wait, can you say that again? ‘Cause I think I interrupted you, go ahead and say it again.

The pharmaceutical reps are always in my PCP office. So I feel like, even that part, like, I feel like there’s something that just isn’t right about that either. You know? Like, all these pharmaceutical companies and everything else, like. I got the– the best medications were covered when I was on my grandfather’s insurance. I never had to pay anything. Maybe five dollars. And then, I get Medicaid, and the only thing that’s covered on Medicaid is generic. But when I got my grandfather’s insurance, I got top of the line medications and I paid the same price. That doesn’t make sense to me.

What do you think that you symbolize to the hospital system right now, as someone who’s on Medicaid with your health issues, while– how do you think the system sees you?

[00:27:10]

[sigh] [pause] Um. [pause] I don’t think they take me as serious as they would if somebody walked in there, like I said, with amazing insurance or paying cash. Like, you– you look at, and this is like, you can even go from this point, where, like, I look at all these– I wanna say, like, people that make like six figures a year and this and that, everything else. They get the best medical treatment that there is out there. Because they have the money to pay for it. I go in with Medicaid, I can’t even find a doctor! That takes it! Nevermind the best treatment. So I feel basically like I’m worthless. 

Do you feel like, do they treat you like you’re worthless?

Sometimes. Sometimes you get doctors' offices that do the right thing. That are actually there to help people. You do get a lot of those offices. Um, for instance, when I had my son. My recent son, he’ll be three in July. When I was pregnant with him, I went from– I lived in Newark, New Jersey at the time, and I moved back to Monmouth County, New Jersey. When I was going to the doctor in Newark, I felt comfortable. I came down here, I went to a doctor in Red Bank, New Jersey. Now, I come from an urban area. Felt comfortable. And I go to, I guess you would say an upper-class area. And the first thing he asked me when I walked into his office was, “Are you on any type of methadol? Or drugs?” I said, “Excuse me? I’ve been in recovery for four years. No. But why are you asking me that?” He said, “Oh, it’s just standard.” “Did ya ask the lady who paid cash out there if she was on methadol? ‘Cause she paid cash right before me. I wanna know if you asked her if she was pregnant, too.” I don’t think he did. Because he came out and greeted her and everything. 

[00:29:58]

It’s my first appointment there, he should have at least come out and greeted me, too. And at least drug tested me first, before he asked me that question. And if something came up, I can understand him asking me that question. But nothing coming up in my system? There was no reason for that. And not only that, two days after I had my son, I had DIFUS in my room, telling me I had post-partum. That, [laughs] they were there for a “well check” because the hospital let them know I had post-partum depression. I was fine. [laughs] I had never been so happy in my life to have a child. It was the first time I had a child that wasn’t– I was clean for years, you know. I enjoyed having him, like, had amazing pregnancy, like. I had any issues. Where was the post-partum depression?

What is, DI, uh, sorry, DIFUS, is that what you said? 

Oh, well, now it’s DCPNP. But they were there, because of my past. They called them because they looked up my past.

And then, can you just explain for people who might not know what that is, like what they’re– what that agency is?

Oh, it’s Division of Child Protection and Pregnancy. Um, and I had an issue with them when I got arrested. Um, where my grandfather, my grandmother had to take guardianship of my oldest two children. Because I was gonna be gone longer than I was supposed to be.

I’m sorry. Can we start over with that full sentence because it stopped. It, it filled up that, that—

Oh, yeah. No problem.

Sorry, and I also [inaudible] It’s almost– it’s like 3 o’clock. Actually, okay, um, because the thing is going to run out, in like, five minutes?

Oh, okay. 

So maybe we could talk about, um, could you tell me a little bit about the fact that you didn’t want to go to the hospitals anymore? Like– [inaudible, overlapping]

[overlapping] Oh, oh yeah! I can do that. It actually started with that. It started with that. Um, I’ve never been a big fan of hospitals and doctors and none of that. Um, but after that? Because I had so many run-ins with DCPNP before and I lost my first two children. The nurse that came in the day before, um, the DCPNP worker showed up. The nurse came in and she was like, “Um,” because I refused the Percocet. I was only taking the Motrin. She was like, “I’m surprised.” I said, “Surprised? Of what?” And she said, “you know, that you didn’t take any pain medication.” I said, “Why is that?” She said, “Well, you know, you have a history of it.” I said, “So that’s why? Why are you offering it to me? If I’ve already refused it?” 

[00:33:12]

Now, if I wasn’t strong in my recovery in that moment, I could have relapsed! I could have relapsed. If you looked up my past, and you looked at my chart, you could see that I was a recovering addict. So, why would you offer me a Percocet? And ask me why I wasn’t taking it? Obviously, I didn’t need it. Obviously, I didn’t want it. That’s the first issue. I’m an addict in recovery. So, when I go to places like that, you’re pushing things on me that I shouldn’t be taking because I'm a so– I feel like you’re doing it because, it’s, like, you’re like, setting me up for failure! Then, I don’t take your Percocet. So there was no reason there to call DIFUS. Then they come because I have post-partum depression. I never been so happy in my life! [laughs] I swear to you! I had never been so happy in my life. And I left that hospital so scared. Because of the issues I had before. So, I didn’t feel safe. You’re supposed to feel safe in the hospital. And ever since there, I just. I won’t go back. I will not go back to a hospital. I go to doctors. I’ll go to a doctor, you know. I mean, there was a situation where, I couldn’t, I bent down and I couldn’t, I couldn’t get back up. My back was out, done. My fiancé, “Come on, we’re going to the emergency room.” I said, “I will, I won’t walk again. I promise. Do not take me to an emergency room.” Because no matter what, no matter what your life is in their hands. And it could be somebody that goes by that oath? Or it could be somebody that’s prejudiced. And you don’t know. And they have access to every single record you have. And I don’t trust anybody now. Since I had my– my son. And after I had all these allegations held against me by the hospital that weren’t true. 

[Annotation 5]

But if you imagine having to go back into the hospital, and, how does your bod– how?

I literally take panic attacks. I literally take panic attacks. If I feel like I might have to go to the hospital, I feel like I take a panic attack.

[00:36:08]

And, not only that, but I’m so scared that if, like, I feel bad for my son! Because, I’m constantly, “No no no, don’t touch that! No no no no, you’re gonna fall! No!” Because I don’t want to go to the hospital. Right away, they see somebody with Medicaid, was an addict or has a history or, and you want to right away say, “Oh, well, call Child Protection Services on that one.” But if I came in there and I had money, and I had a good insurance, and it looked like I took care of my kid? I’d be fine to come in and out with no problem. 

If there was, like, let’s say the hospital CEO could watch this video and you could address that hospital CEO, is there something you might wanna tell them, that you might want him to hear? Even if he might not watch this video, is there something you’d like to tell?

The hospital CEO?

Yes, the, like, the hospital, you know, they have administrative staff and individuals.

[pause] I feel like the administrative staff lets the staff make the rules. [pause] [inhale] And, I think they should do a lot, a more thorough investigation of who they hire. Because a lot of people that they hire are not who they are. [car honks] On paper. They’re just not. 

Unless you have money and then they can play that role.

Well, if they have money and they got into these, like, right now, I wish I could go across the street and go to Rutgers. Know what I’m saying? But I have to go through a one-stop career center. So I’m not gonna get the education that somebody at Rutgers gets. But! I have the compassion, the empathy that they don’t. So, where’s the medium? It’s all because they have a better education. They’ll take them over me, instead of somebody that scores high on compassion and empathy and caretaking and everything else. I don’t see how that makes sense.

Is there something that you would like the hospital staff to hear? Is there anything kind of [inaudible]

[pause] I. [pause]

That might help others to understand?

[00:38:54]

See, I don’t– I don’t know how I could, how I could even put it, because it, I feel like no matter what I say and no matter what I do, or how I say it, or how I do it, it’ll never make a difference in the eyes of the people that are making money off of it. Because even if they do watch this right now, it could be somebody that, like me, who has compassion? That empathy and everything else. Or it could be somebody that, [tsk] just has a high rank and enjoys the money. So. I mean, my take into it is, you really need to have a more empathetic heart to be in that field. [truck backing up beeping] Because if you’re just in that field because you feel like it’s– you get the most out of it? Financially? Shouldn’t be there. Because that’s not what it’s for. 

[Annotation 8]

Yeah, I almost feel like you’re, like the way that you’re talking about hospitals, I almost feel like. It’s almost like you were in an abusive relationship with the hospital!

Yeah!

Think, it’s almost like the same things, you would be like–

Yeah!

“No matter what I say to you, you’re not gonna change!” Like.

Because right now, because I have, alright, so. Again. I’m an addict. We’ve established that, ‘kay? I have to struggle with that every day of my life. So. Why, if I wanna become a productive, a more productive part of society now, do I have to fight harder than everybody else? So I’m not, you know, a rockstar. I’m not, you know, an actress. I don’t own this great big Fortune 500 Company. Know what I’m saying? I’m not a rap artist, I don’t, I don’t wanna be! [laughs] I don’t wanna be, to be honest. I like my close little comfort life. Um. But, I feel like, if I was? I would be okay. And that’s not okay! ‘Cause that’s where you get, [sniff] all the– the confusion from. And then people like me who are, need the help, but they don’t wanna go get it. Because, I feel like even if I do take that first step and I do go back for it, it’s gonna be worse than the first time. Because now, it’s been so long that they’re gonna look at me like, “Oh, she just– she’s just here for something and she needs fixing off of.” Or, “She’s just here because of this and that.”  And it’s not the real reason why I’m there.

[00:42:16]

But they’re profiling me on that.

Right.

Instead of helping the situation I’m in. Like, and I feel like hospitals don’t do their due diligence for people who are in certain situations, like, for instance, the ambulance. And I witnessed this first hand, which is why I’m saying this. [sniff] The hotel I’m staying at, ambulance, police, all that, show up. And there was a lady who had come there from the hospital. She was ment– you could tell she was mentally disabled. Um. She was homeless. She had no shoes. I gave her a pair of shoes. I gave her food. Um. You know, I did whatever I could to help her while I was there. She couldn’t pay anymore, so they kicked her out. I called the ambulance. “Somebody’s gotta help her, she’s mentally disabled.” They left her there. On Route 1. In Edison. The police left her there, the ambulance left her there. So who are you supposed to call for help? Because after that, I don’t know. [pause] And they didn’t help her. They left her on a busy highway, mentally disabled. So, after that, I wouldn’t call an ambulance if somebody was dyin’ on the side of the road. I would try and save them myself. And that’s just how it is. [sniff]

[Annotation 10]

Okay, I’m gonna stop this because I wanna make sure you’re– our time is up.

Oh, okay.

[inaudible] That was, [laughs], that was so good!

[00:44:23]

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