Month: November 2021

Disparities, or differences, in the incidence and outcomes of cervical cancer exist.  Our current understanding of cervical cancer and human papillomavirus were born of a situation that parallels some of the same issues that exist today, while highlighting the reasons behind changes to rules about informed consent.  One cannot write about cervical cancer without discussing Henrietta Lacks.  Henrietta Lacks was an African American woman who was treated for her cervical cancer in 1951 at Johns Hopkins Hospital in Baltimore, one of the few institutions that would provide care for low-income people of color at the time (Johns Hopkins medicine [JHM], n.d.).  The tumor was biopsied and then Lacks underwent surgery and radiation.  However, she ended up dying from the cancer months after diagnosis, in a segregated ward (Kaylin, 2006).  On autopsy, it was discovered that the aggressive cancer had metastasized throughout her body (Sands, 2010).  According to JHM (n.d.), during that same timeframe researchers were trying desperately to grow human cell lines from samples taken from patients, albeit unsuccessfully.  Informed consent was not something that was routinely obtained or required.  When Lack’s doctor biopsied her tumor, the cells were sent to a researcher, Dr. Gey, who tried to grow them out, just as he had done to countless other tumor samples.  Until these cells, attempts at culturing would end with cell death within 36 hours.  In the case of Ms. Lacks, her cells rapidly multiplied, and in fact, continue to do so today.  They have been named HeLa cells for the first two initials of Henrietta Lacks first and last name (JHM, n.d.).  HeLa cells have been used for medical research on HIV, cancer, in vitro fertilization, and to create vaccines such as HPV, polio, and COVID-19 (Cramer, 2021). 

So why did HeLa cells survive and replicate when no other human cell lines had?  The first thing was that they were infected with the virus human papillomavirus (HPV).  HPV acts by inserting its DNA into the host cell nucleus where the chromosome (cell DNA) is located, thereby creating mutations that might bypass the body’s defenses or make infected cell lines more resistant to them (Kaylin, 2006).  In the case of Henrietta Lacks, the virus caused mutations that interrupted the normal cell p53 function responsible for repairing mutations in normal body cells and stopping tumor growth, which resulted in unchecked division and growth (Kaylin, 2006).   All DNA viruses (RNA viruses work a little different) cause mutations this way, and the discoveries obtained from working with HeLa cells eventually led to knowledge about the link between a number of different viral infections and cancers, such as hepatitis B and C to hepatocellular carcinoma, Epstein Barr virus (EBV) to Burkitt lymphoma and nasopharyngeal carcinoma, and human T lymphotropic virus type I to adult T cell leukemia/lymphoma (Kaylin, 2006).   Second, Henrietta Lacks was also infected with syphilis, postulated to be a gift from an unfaithful husband, and this caused changes in her cervix and immune function that predisposed her to HPV infection and subsequent aggressive tumor growth (Sands, 2010).  Third, HeLa cells have overactive telomerase, which is an enzyme that adds repeating sequences on the end of chromosomes, thus making them immortal (Ivanković et al., 2007).  Normal chromosomes have telomeres at the end, which have protective functions, and become shorter each time a cell divides and replicates (the definition of aging interestingly).  Once the chromosome becomes short enough, this serves as a shut-off for cell replication, and prevents out-of-control growth, such as what occurs with tumors (Ivanković et al., 2007; Sands, 2010).    

This all relates back to health disparities because of what happened to Henrietta Lacks immortal cell line.  Let me start by saying that the initial researcher that grew out HeLa cells never profited from them (Sands, 2010).  He freely shared the cells around the world.  Again, obtaining informed consent was not standard in that time (JHM, n.d.).  Lacks presented to an institution willing to provide care for African Americans (unfortunately rare then), and she received full treatment for her cervical cancer (JHM, n.d.).  The cervical cancer’s particularly aggressive nature is probably what led to its immortality, and because the cancer tolerated pretty much any growth condition, growing conditions could be experimented with and this led to knowledge about culturing less hardy human cells later (Sands, 2010).  According to Stump (2014), eventually over 11,000 medical patents would exist on HeLa cells, and they would be mass produced and sold by for-profit institutions.  Her entire genetic code was mapped out and posted on the internet, potentially violating the privacy of living relatives.  The family was not informed of the cell line until a news article outed this information.  Researchers also obtained blood samples from family members without explaining the reason, and family were allowed to believe they were being tested for some condition, rather than as subjects of study.  Biotech companies commercialized and then profited off the cell line, all the while the Lacks family were never compensated (Stump, 2014).  

Today, health disparities continue for racial minorities and low-income women, both of which are embodied by the life of Henrietta Lacks.  According to Olusola et al. (2019), African American women are more than 60% more likely than Caucasians to get cervical cancer and they are more likely to be diagnosed at later stages.  Hispanic women have even higher rates of cervical cancer and poorer outcomes, and this difference cannot be accounted for entirely by differences in screening rates.  Low-income women are less likely to undergo routine screening per recommendations due to inability to pay, and so are more likely to be diagnosed at later stages of disease.  The same can be said of women who live in rural or remote areas.  They forgo routine screening due to geographical location, and as a result, present with later stages of cervical cancer (Olusola et al., 2019).  Bryant (2021) described various factors which may contribute to these health disparities, including cultural norms such as who can do a pelvic exam and whether or not this causes shame, implicit bias such as the provider assuming that a lesbian would not need screening for HPV because she does not engage in vaginal-penile sex, healthcare system issues such as access to affordable care, and sociocultural issues such as poor health literacy or lack of transportation to healthcare visits.  

References

Bryant, A.  (2021, Sept 13).  Racial and ethnic disparities in obstetric and gynecologic care and role of implicit biases.  UpToDate.  Retrieved Nov. 16, 2021, from https://www.uptodate.com/contents/racial-and-ethnic-disparities-in-obstetric-and-gynecologic-care-and-role-of-implicit-biases?search=health%20disparities%20cervical%20cancer&source=search_result&selectedTitle=6~150&usage_type=default&display_rank=6

Cramer, M.  (2021, Oct 13).  Henrietta Lacks, whose cells were taken without her consent, is honored by W.H.O.  The New York Times.  Retrieved Nov. 16, 2021, from https://www.nytimes.com/2021/10/13/science/henrietta-lacks-cells-who.html

Ivanković, M., Cukusić, A., Gotić, I., Skrobot, N., Matijasić, M., Polancec, D., & Rubelj, I. (2007). Telomerase activity in HeLa cervical carcinoma cell line proliferation. Biogerontology, 8(2), 163–172. https://doi.org/10.1007/s10522-006-9043-9

Johns Hopkins Medicine.  (n.d.).  Honoring Henrietta: The legacy of Henrietta Lacks.  Retrieved Nov 16, 2021, from https://www.hopkinsmedicine.org/henriettalacks/

Kaylin, J.  (2006).  The virus behind the cancer.  Yale Medicine magazine.  Retrieved Nov 16, 2021, from https://medicine.yale.edu/news/yale-medicine-magazine/the-virus-behind-the-cancer/

Olusola, P., Banerjee, H.N., Philley, J.V., & Dasgupta, S. (2019). Human papilloma virus-associated cervical cancer and health disparities. Cells, 8(6), 622. https://doi.org/10.3390/cells8060622

Sands, J. M. (2010). The Immortal Life of Henrietta Lacks. Jurimetrics, 51(2), 131–140.

Stump, J. L. (2014). Henrietta Lacks and the HeLa cell: Rights of patients and responsibilities of medical researchers. History Teacher, 48(1), 127–180.

Medicine has historically addressed health as a function of treatment of disease. Due to soaring costs and increased focus on evidence-based medicine, there has been a movement towards preventing disease and promoting health, and this holds true for mental health as well. The burden of mental health is high, with 46% of adults having experienced at least one mental illness during their life (Misra et al., 2021). According to the Substance Abuse and Mental Health Services Administration (SAMHSA) and Center for Mental Health Services (CMHS, 2007), benefits of prevention programs include money savings, such as that realized by lower resource utilization with acute care services, special education and disability programs, and foster care among others, and reduction in expenses associated with incarceration or inpatient psychiatric treatment. Treating mental illness early results in an interruption of the processes that lead to disproportionate chronic conditions in its sufferers with inordinate use of healthcare services. The “human capital” benefits to disease prevention and health promotion include individual contributions to society such as gainful employment, community service, and safety. An example of safety as a human capital benefit is illustrated when programs reduce incidence of drunk driving and result in lower harms and costs associated with accidents caused thereof. Finally, one cannot put a price on the benefit of quality of life achieved from health promotion and disease prevention (SAMHSA & CMHS, 2007). 

 
        Unfortunately, the United States (U.S.) faces some major hurdles for implementation and maintenance of health promotion and disease prevention processes in mental health. Stigma is “negative beliefs and actions including prejudice (stereotypes) and discrimination (behavioral manifestations of prejudice)” and encompasses stigma from society, organizations and laws, other individuals, or self (Misra et al., 2021, para. 4). Misra et al. found that stigma resulted in “financial, healthcare, and legal barriers to mental health services” (para. 21) such as the high cost of psychiatric medications, application process for social programs, and availability of quality programs for undocumented immigrants and incarcerated patients. They also pointed to communication-based stigma as problematic, in that mental health information often was not available in the right language or at the reading level of patients needing service. Stigma as related to feelings about mental illness from family, friends, and self could lead to concealment of symptoms or diagnosis, feelings of burdening loved ones, low self-efficacy, and self-isolation. They indicated that stigma arose from a lack of knowledge about mental illness, including beliefs about this as a moral failing, something that interferes with the value of an individual, contagious, a failure of family to appropriately raise or parent, and stereotypes about what a person with mental illness is capable of (Misra et al., 2021).  

        Fragmentation of care can be especially dangerous in terms of mental health treatment and health. Patients with psychiatric diagnoses are more likely to have substance abuse issues, engage in risky or dangerous activities, attribute lower importance to diet and exercise, more likely to be of lower socioeconomic status, and may be in unsafe environments (Ward & Druss, 2019). Increased complexity of care, cost, and specialization has led to providers providing in-depth care in their respective specialties, but major aspects get missed when patients do not have access to all specialties needed either due to lack of specific providers, cost, patients feeling overwhelmed with the care they already require, and time constraints for both the patient and providers (Timmins et al., 2021). When specialties are unavailable, patients struggle to get any care, even from the providers they do have available to them. Primary care will not manage psychiatric medications they have been on for years. Psychiatric providers feel uncomfortable counseling on diet and exercise. Screenings get missed. According to Koven (2013) over a third of mental health care is provided in the U.S. by primary care providers, mostly due to a lack of mental health providers. This ties into the next problem in the U.S.  

       Availability of affordable mental health services is problematic. According to Walter et al. (2017), 43.1% of patients surveyed went without mental health care because they could not afford it. They wrote that the Affordable Care Act (ACA) of 2010 reclassified mental health care as an essential medical service and required insurance companies who cover it to reimburse similarly to that covered for medical or surgical care. The preexisting condition clause of ACA made it illegal to deny care based of previously diagnosed conditions, and this extended to mental illness. The ACA also started requiring mental health screenings /preventative care to be reimbursed at 100% (Walter et al., 2017). Unfortunately, this does not address the lack of mental health providers, or the patients not covered by insurance. The U.S has 268.6 mental health providers from all specialties for every 100,000 population (Health and Human Services [HHS] & Centers for Medicare and Medicaid Services [CMMS], 2020). This includes specialties such as psychiatrist, phycologist, counselor, and psychiatric and mental health nurse practitioner (PMHNP). HHS & CMMS wrote that “one in 5 Americans experienced some form of mental illness (not including substance abuse disorders) in 2019, but only 44.8% of adults with any mental illness and 65.5% with a serious mental illness reported receiving treatment in the last year” (para. 5). Most counties within the U.S. are currently experiencing a mental health professional shortage, and this is only expected to get worse with the current coronavirus 2019 (COVID-19) pandemic.  

        These major challenges are highlighted in my community by the current struggle with healthcare worker burnout during the COVID-19 pandemic. According to Kelly et al. (2021), professional burnout is “the occupational exhaustion, disconnect, and lack of personal accomplishment associated with one’s work” (para. 9). Previously viewed as an individual health concern, the World Health organization (WHO) changed the definition to designate burnout as an “occupational phenomenon” just prior to the pandemic (Kelly et al., 2021). There are three distinct components of burnout that can occur in concert or as a progression: emotional exhaustion, cynicism, and reduced feelings of making a difference or self-efficacy (Howell, 2021). According to Howell (2020), exhaustion happens when nurses and other healthcare personal are asked to work overtime, take more complex patients in areas of medicine they haven’t traditionally been trained for, reduced resources such as ventilators and trained nurses, lack of self-care and recovery, new and changing protocols, upsets in routine, insomnia, lack of communication, and strained communication within the interdisciplinary care team. This eventually leads to moral distress “when a person acts in a way that goes against an established ethical and moral response to a situation… Institutional and structural limitations have placed nurses in positions where they must make a series of decisions, shift after shift, minute by minute, which run counter to their training, responsibilities, and often, their personal beliefs” (Hossain & Clatty, 2021, p. 27). According to Howell (2021), cynicism is the depersonalization of patients to allow emotional distance between them and the healthcare worker, as a defense mechanism. Lack of self-efficacy leads to shame and reduced productivity. All of this results in increased rates of depression, anxiety, post-traumatic stress disorder, substance abuse, insomnia, poor self-care, and suicide (Howell, 2021). 

 
        Stigma, availability of care, and fragmentation of care are at the root of the problem with burnout. Let us say that one hospital is addressing this by bringing in speakers for an hour to speak about burnout, followed by a 15-minute appointment with a counselor if you are willing to wait around after the lecture. This is during time off. There have been no requests for staff input into what will help prevent or mitigate burnout. There is no push for nursing empowerment. This hospital used to offer influenza vaccination on nightshift, so these workers wouldn’t have to come back to the hospital to get them, on their day off or during sleeping hours. This year is the first year that they are requiring all staff to come to a vaccine clinic during normal business hours. Hospital staff have started to have communication issues and anger between departments. Management’s response has been that we need to accommodate those angry reactions because everyone’s stress level is high right now. People are called in to work extra shifts at all times of the day and night. People are working extra shifts and guilted if they do not sign up for any. Maybe vacation time has been canceled and put on hold. Nurses are taking more patients than what was previously established as safe staffing ratios. There are too few intensive care unit nurses, so they are being paired with a medical-surgical nurse “helper” so they can take more patients. People are feeling bad about the care they are providing, and no one is recognizing their hard work. The kitchen has been closed to staff for some time now, as to discourage congregation during the pandemic.   Perhaps the hospital did create a program to address burnout, involving coming in early for mandatory meetings for staff to discuss how they are feeling and how they are going to address the current crisis. But they probably did not ask frontline staff for input before implementing and putting further demands on their very precious personal time.     

There is shame in seeking mental health help. Healthcare workers notoriously have had a culture of stoicism and focus on patients’ needs before their own. All of this is in the setting of a much greater shortage of mental health professionals than what is average in this country. Insurance often covers a select group of mental health professionals, some of whom may not be accepting new clients right now. Maybe my personal mental health professional is not covered. No one has time for preventative care, and most are worried about increased contact with the public, given the massive numbers of COVID-19 patients we are seeing every night. Three weeks ago, Montana had the highest COVID-19 cases in the country (Schabacker, 2021). 

References

Health and Human Services, Centers for Medicare & Medicaid Services. (2020, Sept). National Plan and Provider Enumeration System, United Health Foundation.  America’s Health Rankings analysis of U.S. Retrieved Oct 24, 2021, from AmericasHealthRankings.org
Hossain, F., & Clatty, A. (2021). Self-care strategies in response to nurses’ moral injury during COVID-19 pandemic. Nursing Ethics, 28(1), 23–32.         https://doi.org/10.1177/0969733020961825
Howell, B.A.M. (2021). Battling burnout at the frontlines of healthcare amid COVID-19.  AACN Adv Crit Care, 32(2): 195-203. https://doi.org/10.4037/aacnacc2021454
Kelly, L. A., Weston, M. J., & Gee, P. M. (2021). A Nurse Leader’s Guide to Reducing Burnout: Strategies to Improve Well-Being. Nurse Leader, 19(5), 467.            https://doi.org/10.1016/j.mnl.2021.03.012
Koven, S. (2013, Oct 21). Should mental health be a primary-care doctor’s job?  The New Yorker. Retrieved Oct 24, 2021, from https://www.newyorker.com/tech/annals-of-technology/should-mental-health-be-a-primary-care-doctors-job
Misra, S., Jackson, V. W., Chong, J., Choe, K., Tay, C., Wong, J., & Yang, L. H. (2021). 
Systematic review of cultural aspects of stigma and mental illness among racial and ethnic minority groups in the United States: Implications for interventions. American Journal of Community Psychology.https://doi.org/10.1002/ajcp.12516
Schabacker, E. (2021, Oct 19). Montana leads country in COVID cases per 100K.  Billings Gazette. Retrieved Oct 24, 2021, from https://billingsgazette.com/news/local/montana-leads-country-in-covid-cases-per-100k/article_b33f0833-20ef-5cce-a4c6-520aeee485c6.html
Substance Abuse and Mental Health Services Administration, Center for Mental Health Services.  (2007). Promotion and prevention in mental health: Strengthening parenting and enhancing child resilience.  DHHS Publication No. CMHS-SVP-0175. Rockville, MD.  
Timmins, L., Kern, L., Ghosh, A., Urato, C., & Rich, E. (2021). Predicting fragmented care: Beneficiary, primary care physician, and practice characteristics. Health Services Research, 56, 60–61. https://doi.org/10.1111/1475-6773.13782
Walter, A.W., Martinez, L.S., and Lopez, L.M. (2017). Mental health care in the Affordable Care Act Era: Harnessing the power of communities. In S.J Rosenberg and J. Rosenberg (Eds.), Community mental health: Challenges for the 21st century (3rd ed., pp. 314-322). Routledge.  
Ward, M. C., & Druss, B. G. (2019). Treatment considerations in severe mental illness: Caring for the whole patient. JAMA Psychiatry, 76(7), 759–760.         https://doi.org/10.1001/jamapsychiatry.2019.0903