My name is Donna Karol. Due to my illness and own financial and emotional situation several months ago I decided to dedicate my energy to starting my own nonprofit organization "Donna
Karol Hepatitis C Foundation" you see I contracted the virus in 1989 while giving birth to my twin sons which at that time I received a blood transfusion, this was the year prior to screening
the blood banks for the virus. I now am in the final stages of the virus. I work for a medical office as a medical biller, the Physician I work for lets me work part-time in the office and
part-time at home so I am able to keep up with my medical benefits. Should I lose my benefits I would be taken off the transplant list.
This is what lead me to wanting to start my own
nonprofit. Not all employers let their employees work from home, some employees would terminate them, therefore, putting them at risk of no-insurance and possibly no medical treatment for the virus
which is very costly. Hospitals will not consider you for a transplant without insurance and verify your coverage every 3 months to make sure your coverage is still active or you are knocked off
the list. Sounds cold, but it is true. However, since the time that I decided to start the nonprofit I have become quite ill and seems I may need to seek financial donations myself. I
am only 37 years old. I have 3 boys ages 12 year old twins and 13 years old. Last year my husband and myself, which are like most, a 2 income family, we finally were able to get a
mortgage on a home which was a long time dream of ours. Since that time I have become increasingly ill. I now drive to work in the morning crying from pain, I bleed from my skin do to my
liver not producing the proper coagulants and my platelets are dangerously low. I have to go to work with a fake smile on my face, and must work harder than others in order to prove that I am not
to sick to handle my job. for me to get social security because of my age (37) it is very hard, you would have to be out of work for approximately 6 months before even applying, then you would
probably be denied and have to go to court a few times, then it takes almost a year before seeing your first check. It takes even longer for the prescription portion to take effect and then it only
covers 44 months of the anti-rejection drugs that you must take for the rest of your life after the transplant.
I am being treated at Johns Hopkins University with wonderful physicians, they know
that my best bet would be to be able to stay at home and take care of myself, but this is not financially possible. My sister is now in the process of being a potential living organ donor for
me. this would work out pretty well considering I would be able to have the transplant done this year, 6 months of short-time disability and back to work I go. however I am getting too sick
too fast, my insurance will only pay a portion of my sisters surgery leaving me with over 100,000.00 that I would be responsible for myself . This $100,000.00 would have to be paid at least 50% prior to
surgery being performed. As much as I hate to do this, since I originally sought to help others first, I have become in much financial need. Please help me on how I can raise money for my
sister and I to have the surgery done and to help with cost should I not be able to work at all.
Sometimes I think about what if tonight I go into complete liver failure, what will happen? I
only have 6 months disability. Long term disability through my work turned me down. Not only do I worry about dying and leaving my children without a mother, I worry about losing our home and
everything else we have been fighting for, for so long. Please help me in anyway you can, I have looked at every angle, I am now quite panicked and quite weak and ill. I don't know how much
longer I can keep smiling at work and hiding the fact that I can bearly make it through the door each morning. Sometimes at work I have to go into the bathroom for at least a half hour to get my
nose to stop bleeding, my skin to stop bleeding and I can't keep up with this much longer, please help I am desperate.
Donna S. Karol
Hopefully I will be able to keep my
promise to myself and be able to help others after I receive my transplant, so they won't have to bear what I do everyday.
I would like to post you email on my
message board. it is the number 1 website on AOL under hepatitis c and will receive much attention. If you agree, or want to alter it any Please let me Know
In Good Health
Thank you for your response. You may post my sister, Donna Karol's letter. I've also attached a letter from myself. If you
feel it will help, you may also attach the letter that I have written. I am writing from the heart and this is very emotional to me, so if there is something you feel I should not say
or if you feel that you should omit my letter and just post my sisters letter then that will be ok also. Again I thank you for your assistance.
Medical Technology vs. Health Care Insurance Companies
Dear Sir or Madam:
Wait until you hear this. My sister, Donna Karol, is 37 years old
with 3 children ages, 12-year-old twin boys and another son age 13 years old. At the time her twins were born she had lost a significant amount of blood and had received a few units of blood post
operatively. Unfortunately, this was just one or two years prior to the screening of Hepatitis C. Now 12 years later she is fighting for her life due to Hepatitis C. She has
worked for a medical office in Delaware and a few years ago she has moved from her South Jersey home to Delaware to be closer to work. Her health insurance is Mid Atlantic.
been going to John Hopkins University and has received incredible care by the excellent physicians and other health care providers at this facility. She was recently told that she is now eligible
to be a candidate for a liver transplant. The thing is the list is so long that she might not receive a liver in time to save her life. They also discussed with her the option of
a living donor. This is where a compatible donor would donate a portion of their liver to her and both portions are expected to regenerate. I am most likely a good candidate and
have been discussing this back and forth with her physician at John Hopkins, and if it is decided to be the best option for her I am willing to do this. I also work in the Health Care Field
as a Registered Nurse. There is not a day go by when I don't find myself fighting with insurance companies to provide my patients with the care that they not only deserve but that they pay
for. Somehow through some of the discussions I have had with insurance companies, there seems to have developed a thought, that I try each and every day to push to the back of my mind, in the hopes
that someday I could prove wrong. Now on the day of 02/03/2001 this became no longer a thought that I try hard to diminish but is foremost in my mind as a monstrous truth.
My sister received a telephone call from the John Hopkins transplant coordinator on this day and she told my sister that her insurance company would authorize payment of her transplant but would not
authorize a payment of the anti-rejection medication that she will need to take thereafter. John Hopkins will not consider this surgery without the authorization of the medication, rightfully
so, due to the fact her body will reject the new liver.
Why would they pay for a transplant and not for the medication when they both obviously go hand in hand. The answer to this was
the very thought that I have tried each day to avoid. This thought is that, we are all good paying clients to the insurance companies until we find ourselves fighting for our lives then we
are only a very expensive burden to them. I really hate the thought that they rather we died then to have a great medical breakthrough save our life, because it is just to costly. This was
just too disturbing to me so I contacted the press and many different government officials. The governor of Delaware forwarded my letter to the Delaware Insurance Commissioner for full
investigation. They have now decided to approve the medication, but it didn't stop there. Now they are refusing to pay a very large portion of my surgery. This has become a maze
road blocks for us and I fear we are running out of time. I have also attached, below, a letter that my sister has written. It is very sad, but not as sad as the
"great nation" in which we live. I don't know where our nation is going with some of these insurance companies but something about the thought that they control who lives and who doesn't
is just too disturbing and
needs to be addressed loudly. I would be very interested to hear how the public feels about this issue.
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