The letters below were sent to the governor’s office in Juneau, Alaska in 2015. They are my story. My mother passed away peacefully on September 23, 2015.
To whom it may concern,
I am writing in hopes to get your attention about a healthcare issue in our family. On December 27, 2014, my mother called me from her home in Talkeetna, Alaska saying she thought she was having a stroke. After 911 was called and she refused transport, her friend and co-worker in Talkeetna drove her to the hospital where I met her and she was admitted to the emergency department. The doctors there ordered an MRI to rule out the stroke. As I sat with her, the ER doctor came back to tell us that she had several tumors in her brain and needed to run more tests to see if it had come from somewhere else in her body. Upon further CT scans, it was discovered that she had a mass in her left lung that was cancerous and it had spread to at least 10 spots in her brain, causing the seizure that we thought may have been a stroke. I can attest that my mother has never been a smoker and cancer is not in our genetic line so this was quite a surprise to us. We were in the hospital for four days, all of which was as positive an experience as it could’ve been.
The problem is that she did not have insurance. She worked 40+ hours a week at a gift shop in Talkeetna serving our wonderful and popular tourism industry. She lives in Talkeetna, pays rent on a historic little cabin, pays for her food and oil to heat her home and works on her crafts as extra income. Unfortunately her employer did not offer healthcare and as the tourist season declines, she works fewer hours and her savings go down as the winter season approaches.
Since her hospital stay, she has undergone two weeks of radiation to her brain to reduce the size of the tumors. She has come to live with myself, my boyfriend and our two kids in Anchorage to be treated at an oncology center for chemotherapy to minimize the size of the tumor in her lung. She has been given a year to live, and she is 53 years old and was in optimal health prior to her diagnosis. My boyfriend works on the North Slope on an oil rig and I am in nursing school, and our expenses have been taxed as well throughout this process.
After all the paperwork for healthcare assistance, today we found out that she was denied Medicaid, Social Security Income and disability assistance, with the reason being that she had a donation account set up with an accumulation of $3,000 in it. This money is for transportation, medications and everyday items one needs to get by in daily life. She has not worked since December 24th and is in no shape to do so throughout her treatment. Even if she was to have healthcare prior to her diagnosis with a high deductible and low co-pay, her savings would’ve been exhausted by day one due to the extensive and necessary testing that was done in the emergency department.
I need to know what I am supposed to do to uphold my mother’s quality of life. What options in healthcare do we have if a terminally ill patient is denied healthcare coverage and her social security benefits that she rightfully deserves? Her treatment is expensive and we understand that, but what are we supposed to do, let her suffer? I am confused as to why she is undeserving of these benefits. She is a good, hardworking citizen of our state and country and deserves the fair chance to live as a healthy human as long as her body allows her. She would like nothing more than to go back to work and live at her home in Talkeetna if she is able to, but we have found out that without the healthcare assistance we need, this is an impossibility.
Please take our story, as I am sure there are so many others, into consideration as a staple to the reasoning behind healthcare reform. I feel that this is an unnecessary and debilitating process to impose upon someone undergoing an unfortunate circumstance such as hers.
Thank you for your consideration and time,
Dear Mr. Governor,
After much time, effort and strength, I feel like giving up on a losing battle. Since December 27th, 2014, my mother has been trying to get into the healthcare system. She was diagnosed with terminal stage IV metastatic carcinoma that started from her lung and went to her brain. There are at least 14 tumors in her brain and that number has been increasing even with radiation treatment. In the past six months, she has applied to Medicaid two times and been denied both times. She has applied to SSI and disability two times and been denied. She has multiple letters from multiple doctors stating she cannot work due to her condition. She has been to the ER two times since radiation and chemotherapy were completed. Both brain CTs showed more edema in the brain tissue. Because of this, she has to be on more and more steroids, which makes her more and more anxious.
What really makes us anxious is how we are going to pay for all of this. Two weeks ago, her oncologist informed us that the tumor pushing on her brain stem was eventually going to grow large enough to cut off the output of spinal fluid. Her brain would sink and she will fall asleep and never wake up. Her exact words were, “It could happen anytime.” She then recommended hospice care in my home. My home consists of myself who is in nursing school, my boyfriend who is on a leave of absence from work to help me care for my mother and my children ages 7 and 2. Believe me, this is a burden. We contacted hospice care in Providence. Since my mother has not been insured and has been denied Medicaid twice, we cannot afford their $500 a day amount. I have filled out yet another financial assistance form with huge hopes that our hard work will hopefully pay off. I have power of attorney over my mother, which is helpful now that it is even hard for her to sign her name or write down the correct date.
Her first denial was due to too much ‘income’ in a donation account. Her last denial of Medicaid and disability was due to a life insurance policy that is considered an asset. Her life insurance policy has been expired since March 2015 because she hasn’t been able to pay for it because she is so sick that she cannot work. Can someone please explain to me how it is an asset if the life insurance check comes through after you die from this detrimental disease and is no help to you while alive? After further investigation, I have found out that the net worth of her life insurance is zero. If she passes and there is no life insurance check when that was what was holding up her financial assistance, I am not sure how I could ever have any faith in our failing healthcare system.
Since this denial, I am not even able to afford to help make my mother to be comfortable before she passes. I have lost respect for our healthcare system. We have been so honest and tried to do everything right to get the care and assistance she deserves, and I feel that she is being tossed away. Please help us, give me some faith back in humanity. I feel there is more time and money wasted on denying people financial assistance then there is accepting people and allowing them the peace of mind my family so deserves.
Enclosed is my first letter to help give a timeline and more background on our situation.