Greetings,
My name is Shatana Watkins, I am from Indianapolis, Indiana. I am divorced, with no children.
I am a 46 years old African American woman living with (stage IV) advanced-stage hormone receptor-positive (HR-positive), HER2-negative breast cancer. I did recognize some of the initial signs of my cancer in my breast years before I was able to address it. I made the discovery by self exam in 2010. I was eventually diagnosed in April of 2021. Since then I have learned of the advancement of my cancer. The cancer has metastasized to my right lung, rib cage area, as well as a small mass in the right side of my brain. The result of the one round of radiation to my brain has been necrosis found in that area. I have had ten rounds of radiation to my breasts, along with a mastectomy. I continue my chemotherapy treatments with various medications including Everolimus, Verzenio, Tamoxifen, and Letrozole. I have also had the procedure used to insert a port for easier access for blood draws and other chemotherapy treatments. At this time, I continue my health care plan per the direction of my Oncologist. I continue my routine care as prescribed by my Oncologist.
I have spent the majority of my time taking care of my mother, who struggled with her own health issues, which in turn caused me to neglect my own health. I had been my mothers primary care provider from August 2006 until my mother passed away in December 2020, during the Covid pandemic. I lost my father in 2013, he was not aware of my condition. I did not want to neglect the care of my mother as I am an only child. I did not share any of my health information with my mother; I never wanted her to worry about me and I continued to place all my focus on her wellbeing until she passed. I also did not share my diagnosis with my closest friends or the rest of my family, until I could no longer care for myself, and needed additional support. I did not want to place any worry or stress on them as they have their own lives to live. During this time, I obtained my Associate’s degree in 2014 in Business and in 2016 I obtained my Bachelor’s degree in Management from Indiana Wesleyan University. My father instilled in me that education is very important, so I made certain to obtain my education and to continue to learn as often and as much information as I am able to.
Living with the disease has caused great physical, mental and financial toxicity. The mental and physical stress of worrying about finances has taken its toll. I am struggling to make ends meet as the cost of living is steadily increasing. I have attempted to find various resources to help fill the gap in what I am lacking, but most do not assist with daily costs of living, and other financial obligations that most adults have. I have worked all of my adult life and I currently receive monthly disability payments. The amount received, while I am thankful for it, I can barely afford to meet my other financial obligations. When employed, I have been without health insurance through my employer for cancer treatments as it was unaffordable. I also had to toggle between missing work or neglecting my chemotherapy treatments so I would not miss any work days. For the weekdays that were missed, I made up for it on weekends. Women with financial hardships can furthermore face challenges in completing comprehensive multidisciplinary breast cancer management, because the frequency of treatment visits will generate costs related to transportation, childcare, and time away from work.
The level of care should also be a focus for those in assisted living facilities and should also be investigated more often than what I have seen in my recent experience. Those who reside in such places may not have a voice in their care or they may not have a family member to voice their concerns. In some cases residents may be taken advantage of mentally, physically and financially. I can share my recent experience(s) in more detail if needed; but as of right now my focus is just on finding ways that an adult with health conditions can financially survive in 2025 and in the years to come. I also would like to focus on finding or creating healthcare services for those that are too young but still an adult who has the need for it.
In 2023, I had to move to another city in Indiana (Kokomo) as I was no longer able to live alone at that time. I lived with a close friend for two years until she was no longer able to assist in care for me due to her full time workload and she also has two children. After a recent hospital stay, my friend decided it was in my best interest to seek a nursing facility in the area. I stayed at this facility from January 2025 to August 2025. I did not select this facility, this was decided by my friend. During this time, there were issues in coverage between Medicaid and Medicare. The coverage between the two can be difficult to understand. As I was trying to find an assisted facility closer to my family, there were issues with locating a place that would accept me due to my age. I have learned that most assisted facilities are mainly geared to those who are 55+. I have also learned that the majority of healthcare coverage including any type of assisted living coverage and acceptance is focused on that of 55+ or older.
During my stay at this previous facility, I have experienced the following issues:
Nursing home has failed to honor the resident’s right to a dignified existence, self-determination, communication, and to exercise his or her rights.
Nursing home has failed to reasonably accommodate the needs and preferences of each resident.
Nursing home has failed to honor the resident’s right to voice grievances without discrimination or reprisal and the facility must establish a grievance policy and make prompt efforts to resolve grievances.
Nursing home has failed to ensure each resident receives an accurate assessment.
Nursing home has failed to develop the complete care plan within 7 days of the comprehensive assessment; and prepared, reviewed, and revised by a team of health professionals.
Nursing home has failed to provide appropriate treatment and care according to orders, resident’s preferences and goals.
Nursing home has failed to provide medically-related social services to help each resident achieve the highest possible quality of life.
Nursing home has failed to ensure menus must meet the nutritional needs of residents, be prepared in advance, be followed, be updated, be reviewed by dietician, and meet the needs of the resident.
Nursing home has failed to ensure food and drink is palatable, attractive, and at a safe and appetizing temperature.
Nursing home has failed to procure food from sources approved or considered satisfactory and store, prepare, distribute and serve food in accordance with professional standards.
Nursing home has failed to make sure that the nursing home area is safe, easy to use, clean and comfortable for residents, staff and the public.
Nursing home has failed to ensure necessary information is communicated to the resident, and to the receiving health care provider at the time of a planned discharge.
I wanted to share my experience(s) as I would like more information on how to start funding for those of us who are under the age of 55+, but also have major health issues. Since Medicare is not an option for me because of my age, I do have a terminal health diagnosis that should qualify myself and others who may face the same struggles. Many individuals fall into a gap where they cannot afford private health insurance, yet their income levels via disability payments are too high to qualify for government-supported insurance. No human being should have to decide on whether or not to seek medical care or to suffer in silence over the concern of the unknown expectations, treatments or just general care. I have spent these past years trying to not only deal with my health, but being constantly hounded to pay for treatment ‘not covered’ with funds I do not have.
The last thing a patient wants to hear when seeking treatment, or waiting for test results, is ‘you have a current balance of…’ I understand that some costs will apply in some cases, but at the same time, how can a person who already has a limited income be expected to take care of their other needs on top of making countless doctor visits that will ultimately result in another financial obligation? It is a vicious, never-ending cycle. There have been times when I have wondered if all the worry and stress that comes with facing this uphill battle is even worth the fight anymore. I am more of a paycheck than a patient. There are some providers who have lost sight of that. Even with some of the foundations I have come across, there is just a constant requirement for funding, but at the same time these foundations boast to have all this support from huge corporations. It is greed at the expense of those who really and truly need it. Patients and their loved ones are going through enough with just trying to survive. No one should feel like a burden because they are in desperate need of assistance and guidance.
Even with Medicaid, most assisted living places still require the resident to pay all of their monthly disability payment to the ‘building fund’ of the facility. This leaves the resident(s) with $52 a month out of their monthly disability check(s). As a 46 year old adult with other financial obligations, this is not a feasible amount to survive. As humans, we cannot predict what health issues we may have, as it’s really not expected in younger adults. Most younger adults have financial obligations such as car and car insurance payments, credit card payments, cell phone payments etc. I am also having issues in locating housing and financially setting myself up to transition to a different location outside of an assisted facility situation because of the lack of my own ‘income’ I am allowed to have. I find myself feeling ‘stuck’ in an assisted living place for the remainder of my days. This has taken a mental and social toll on my overall well-being, in addition to living with my breast cancer diagnosis. I am currently in a position in which I have completed physical therapy expectations and am hoping to be discharged from the healthcare facility I am currently in.
Being new to the way of assisted living has been a culture shock to me as I have always been an overly independent person. During my first experience with a nursing facility, located in Kokomo, Indiana, it made me question the level of care provided to those who really need it. I, for one, still have other financial needs that need to be addressed. Seeing what my previous assisted living facility provided in the terms of care for residents is appalling. From the condition of the cleanliness of the rooms, to the manner in which the food was prepared just to name a few is horrific. The tactics of this facility is manipulative to say the least as they seem to prey on those who are unable to address their own concerns or have relatives that can do the same.
I was constantly hounded for money that I did not have. Even up to the day I was transferred to another facility closer to family, I was approached asking if I am going to pay my balance of $15,000.00 before I left. For people already facing any sort of disease or illness, I found that to be unsympathetic and just rude. For the level of care I received at this facility they did not deserve any sort of government funding nor did they deserve to take all of my disability payments. I am still currently under the care of an assisted living facility located in Indianapolis. To have a disability payment taken from residents by assisted living facilities, in addition to whatever they receive from Medicaid or Medicare leaving only $52 is setting people with a disability or any type of health concern up to financially failing. We remain stagnant as we are not able to move forward with life and recover as a healthcare center intends. Most are forced to remain in facilities as they cannot afford housing and with having to maintain a certain income amount per the SSA, it’s almost impossible to just afford typical costs of living. Those with health concerns that no longer allow them to work and to maintain a certain level of income are under enough stress to deal with in conjunction with trying to remain healthy and continue their healthcare journey.
The biggest issue I have faced in trying to transfer to another assisted living facility is the denial from many facilities due to my age. There is a need for a healthcare program for those younger than 55+. There is a desperate need for facilities that can and will accept and assist those who might not be ready to the normal standard of assisted living, but need the additional support with whatever severe illness they are facing. This would be a social benefit to those who are younger as they can possibly relate those in a similar age group and to those going through similar experiences. Another concern I have faced is challenges in attempting to regain full financial independence due to my entire disability income being already directed to a healthcare facility.
An ongoing issue I am facing is the ability to leave the healthcare facility, as I am unable to financially do so. It is important to add that I am fully able to care for myself at this time, and have only received assistance with meals and medication distributions, which are things I can handle and control myself. I do not require assistance with bathing, dressing, or taking care of my room with cleaning and upkeep. The current facility does not provide transportation as often as I need it, which has resulted in me dealing directly with my patient navigator in setting up transportation for future appointments. While trying to depend on the help for the healthcare facility I am currently in, I have been asked to reschedule my chemotherapy appointments as there was a lack of communication between the chemotherapy office
and the healthcare facility. In turn, I have had to mediate and correct the lack of communication to insure I would not miss any appointments going forward.
I have researched grants specifically for those who have a diagnosis for cancer; and most of them have denied awarding them to me as it was awarded to other patients in need. In my findings, what stands out the most to me is the constant advertisement for donations. There seems to be a rabbit hole of resources for a patient or caregiver to look through. This information is helpful, but it still leaves a lot of legwork for anyone newly diagnosed with this illness. While others have shared their stories, I am unable to determine in what way survivors have been assisted. I have seen advertising for cancer walks and other events but still wonder at the end of these ‘fund raising events’ who are the ones really benefiting? Having support groups and avenues are great in order to share experiences, but what sort of support can be provided other than that of a weekly meeting in person or via a Zoom call?
I am not seeking financially for myself, but I would in some manner, like to help those under the age of 55 + who may face a similar situation. I am not certain as to where to begin in starting such a program, as I am a person who is also in need, but the needs of others is something that definitely needs to be addressed. Breast cancer, as well as other cancers impacting both men and women can occur at any age, regardless of race. Being under the age of 55+ does not mean those individuals cannot face any major health concerns such as cancer. How can the gap of coverage between Medicaid and Medicare meet to where the recipient can keep more of their monthly benefit that they have spent most of their life working for? How can more assistance be offered through grants regardless of race or gender? Where can those who are under the age of 55+ find residency for support and care? And also, in trying to obtain financial assistance with housing or financial support, there is more leg work done by the patient under care to prove what they are undergoing, only to in the long run not qualify for any of the ‘offered’ assistance.
I have found there are a lot of disparities in the care received between African American women and those of other races. I have researched grants specifically for African Americans in general and did not receive many results. Breast cancer is the leading cause of cancer death in the U.S. for African American women. They are more likely than white women to have inadequate health insurance or access to health care facilities, which may affect screening, follow-up care, and completion of therapy. Compared to other racial/ethnic groups, Black women are more likely to be diagnosed with breast cancer at a young age (under 45) and at later stages of the disease, when it is more difficult to treat. Black women continue to die at an alarming rate of more than 40% as compared to white women. Unemployment rates are higher in the African American community compared with the White American community; this disparity persists during times of economic strength and is magnified in the setting of financial stresses. Socioeconomic disparities undoubtedly contribute to the 40% higher breast cancer mortality rates seen in African American women by causing delays in diagnosis and more advanced-stage distribution compared with White American women. Increased access to free or low-cost mammograms can help close the gap and ensure more Black women get timely breast cancer screening.
I have found via the CDC.GOV website that African American women are 40% more likely to die from breast cancer than White women. In all races breast cancer among women is 133 per 100,000 females. I also have researched for guidance on how to even share my experiences; but most websites just focus on donations. I do understand that donations are needed in order to help others, but I also can’t help but wonder if those who really have a need are receiving the assistance.
I also want to be very candid with my care, as had it not been for the care of my patient navigator, nurses and aides at St. Vincent Hospitals as well as Dr. Deng Zhang with the Hematology Oncology of Indiana over the years, this journey would have a completely different ending. While I have had many good experiences with these providers, I still feel there is a lack of empathy from some. We are seen as only patients and not as human beings. There is a need for a reminder to those who serve to be kind, we all have a battle that others know nothing about.
I would like the opportunity to be that voice for those who are not able to speak for themselves. I would like to share my journey with other patients and staff with St. Vincent hospitals to inspire those who may share a similar experience. I want to share positivity and a small token of hope. I have continued to survive with this illness due to their care and my faith in God. As I am today, at first glance, someone who does not know me personally, would have no idea what I have experienced and what I continue to face on a daily basis while still surviving this disease. I still remain as active as I can by spending time with family and friends. I also enjoy bowling as I have done so for over ten years. I would like to return to a sense of normalcy, in spite of my breast cancer. I would like to live outside of an ‘assisted living facility’ as I am primarily a resident to participate in physical therapy. With the exception of receiving my medication I am fully able to perform self-care needs. I fear I will remain stagnant under the care of my current residence as I am unable to find housing or even afford an apartment due my income fully accounted for by the healthcare facility.
Had there been more assistance and affordable coverage available, through my employer, and now through Medicaid, I feel I would have been able to address my initial findings without any worry of how treatments would be covered. There is more concern over ‘who is going to pay the bill’ than the actual health and care of the patient. For me, personally, I have been made to feel like more of a ‘means of income’ than a human being. With all the changes that may impact those under the care of Medicaid, I can only imagine how it will impact those who depend on it for assistance with the costs of Medicaid. There is a lack of empathy and understanding that not only are patients faced with unknown concerns of their own, but those providing their care may also face their own silent battles.
I have seen the success stories of those facing a health crisis and receiving so much support and an excellent level of care, but what type of resources are there for those who don’t know what is available? While I am happy to see the stories of those who are in remission, and those who have beat cancer altogether; where are the stories of those who still face their battles on a daily basis? What about those who don’t meet a certain demographic to even receive such support? Should it matter what stage of illness or what type of illness one is facing? I would like to be the voice for those who may face a similar situation in which they may be afraid to seek medical care or unable to due to other obligations. A person facing any serious medical condition should not have to face it alone. They should not be uninformed, nor turned away from care due to insurance paperwork.
In closing, my experience(s) over the years since my diagnosis has been more stressful financially, physically and mentally than dealing with my terminal illness. I am certain there are individuals my age (or a range of ages 18-55) that have been or are going through a similar situation. There has to be a better solution for those who really need more support than what is provided so those with any sort of illness can focus on the importance of their care and have a better quality of life.
Thank you for your time,
Shatana Watkins
This is not just about policies on paper; this is about human lives.
