GOOD NEWS & HEALTH UPDATE FROM CAROL HARLEY; December 2005

On July 15, 2004 came the public announcement that in April I had been diagnosed with Chronic Myelogenous Leukemia, a rare form of cancer of the bone marrow/blood. During a regular, yearly visit to my doctor, they found that my white count was very elevated like 225,000. A normal person would be 4,000 & 7,000.

After a month of looking at all my options on how to treat this life threatening cancer, I entered a year long clinical trial at the Oregon Health Sciences University in Portland, OR and successfully got the Leukemia under control and into 99.9% remission. Though NOT A CURE, the 2 chemotherapy meds that I self-administer and take daily (Gleevec & Interferon) will HOPEFULLY keep the Leukemia at bay for the rest of my life – and so far, so good!

With the good wishes, prayers and financial assistance of family, friends, fans and even complete strangers, I have been able to continue performing with Misty River throughout this whole ordeal. In fact, I think the performing helps me to keep focused, looking forward, fighting and living STRONG with cancer.

FLASHBACK
Most of you don’t know this, but the first time I had a threatening cancer diagnosis was in 1977 when Laura was 21 months old. They gave me 6 months to live as I had a Melanoma, Level 4 tumor behind a mole on my face, by my left ear. Long story short - I refused to accept that diagnosis and after a miraculous event and surgery, I was healed and began living a normal life with no recurrences to date of melanoma.

Fast Forward to April, 2004. After the initial shock of the possibility of death by Leukemia, the likelihood of my financial destruction became apparent as well. A bone marrow transplant was the only way to really ‘cure’ CML, but after testing my 4 brothers and sisters, and finding NO match for my DNA, I found that my best treatment plan was to start taking the very expensive “miracle” drug Gleevec. I was looking at a prescription drug bill alone of $5,000 – $7,500 for a MONTH for at least 10 years until the drug went generic. Unfortunately, I was also getting no guarantee that my insurances (Medicare and Blue Cross) would even pay for a bone marrow transplant which costs around $750,000 with drug costs of over $10,000 a month. I quickly researched the internet to find what my options were regarding insurance, or getting help with the costs of treating CML. I came up with a few leads but quickly found that I didn’t “qualify” for the meds in one way or the other. I wasn’t quite destitute enough or old enough.

I began to think that I was going to need to sell my house and assets that I’ve accrued to get the cash to get what I needed to stay alive, This was very depressing believe me. The hard part was that these assets were intended to grow and eventually help me financially as I got older, as my income decreased and as I needed more care. To cash them out would have certainly meant a dismal financial future. But considering the alternative, I would do it without question.

ENTER HUNDREDS OF ANGELS.
It was at this time – summer and fall of 2004 – that I announced my situation to the world. I was under the effects of chemotherapy and people knew there was something wrong with me when they’d see me at a folk or bluegrass festival. I was very pale and weak and could hardly walk by myself. I was astounded at the flurry of efforts and fundraising concerts that occurred. All my friends and colleagues from the Bluegrass and Folk Worlds got together and began to help me out. Money started coming to me and in about 9 months I had $30,000+ in a savings account. Since then another $10,000 has come in. I have saved every single card and donation and fully intend to someday hand write a thank you to each person.

At Misty River concerts, Dana would mention that I had a donation can out in the lobby to help me with my expenses that insurance wouldn’t cover, and through those generous ANONYMOUS donations, I averaged about $300 a show. If you are one of the folks that donated, I want to thank you from the bottom of my heart. ♥

FINANCIAL/INSURANCE UPDATE
When I was diagnosed April 2004, I was on Medicare (parts A & B because I am disabled with the broken back in 1990 issue) and on a supplemental insurance, Blue Cross/Blue Shield. Medicare was my primary insurance and was limited to what they could pay for. I was not able to get a straight answer from Medicare as to whether or not they would pay for a bone marrow transplant should I go into the acute stage of CML and need one. My Blue Cross/Blue Shield was the secondary insurance and for some procedures would cover costs over and above usual and customary that Medicare didn’t cover. However, the WORST thing facing me now was that I had no PRESCRIPTION INSURANCE and the costs were going to be mammoth.

You might ask “Why was I on Health Insurance with no prescription coverage?” Well, back when I was getting divorced in 1997, my biggest concern was having the best doctors and cutting edge technology for treatment of my failed back surgery syndrome. My health charts were huge and I was not a good risk to any insurance company so the only health insurance I could qualify for at the time had no prescription drug coverage. I wasn’t too worried about it then because I didn’t use many prescription drugs. And the ones I did use were inexpensive.

BACK TO APRIL 2004. Here I am. Diagnosed the 2nd time in my life with a life-threatening cancer. Though no consolation, the doctors all said that I picked a good time to get CML because of this new miracle drug that was developed right up at OHSU in Portland. Results were outstanding so far. So, as you know, I researched my options and decided to go with OHSU and a clinical trial with Gleevec and Interferon. I started treatments in April 2004, just before Misty River went to China.

Upon returning from China and starting up on my current medication regimen I received an email from a Misty River fan and insurance agent in Portland (you know who you are) asking if I had ever thought of trying to get onto an HMO, like Kaiser-Permanente to cover me? I had steered away from HMO’s in the past because I wanted to choose my own doctors. And, many of the HMO’s in the 80’s had failed yadda ya. I told him “No” and he proceeded to inform me that he had done some initial research and thought that I would qualify for a certain plan at Kaiser Permanente for people who are disabled, and on Medicare parts A & B but are still under the age of 65. Well, that was me!

A long story short, I DID qualify for Senior Advantage I at Kaiser and they would take me on as a new patient. And, there was prescription coverage – a whopping 75% of any drugs on their list. Yes! Gleevec was on their list and so was Interferon (the other regular med I take). I felt like saying to Kaiser “Are you CRAZY? Do you know what I am going to cost you?” Evidently they did. A MIRACLE for sure I thought!!

However, it was not really as ‘slam-dunk’ as you might think. I had to carefully weigh the benefits with the drawbacks of changing insurance carriers. Yes, the benefits were that my Rx drugs would now only cost me around $1250 a month which is way more manageable than $5,000+. But I would be forced to use their Doctors, Hospitals, clinics and other facilities for all my medical care. And, those specialty procedures like bone marrow biopsies, and the best drugs to combat chemo symptoms would most likely NOT be available. So, how much do I trust their oncology doctors and facilities to do what OHSU did so well? Would Kaiser approve some of these cutting edge procedures? I had so many questions. Another option was that I could just continue my care at OHSU with the doctors there and pay for these bone marrow biopsies and special super sensitive DNA tests on my own, which would be around $4,000 - $6,000 a year of my own money. But CLEARLY, even the cost of all that is less than having to pay for the Gleevec & Interferon for even 2 months let alone the rest of my life.

I researched more to find out the quality of Kaiser’s programs and staff. I talked to others, even friends who were on Kaiser. I visited with those men who would be my Primary Care and my Oncologist at Kaiser and I liked what I saw. However, Kaiser could – at any time – take away certain plans or certain benefits on ANY of their programs. You never know when they have to turn the numbers around to continue to make the Health System successful – it’s all about numbers as we all know.

Additionally, I found out that Kaiser would pay for a bone marrow transplant if I needed one. Oh, this is sounding good to me. Could this be the miracle we all prayed for? Now I needed to know if they would/could refer me to one of the better clinics (OHSU or Hutchins in Seattle) to do the actual bone marrow transplant – IF I needed one. Yes, they ‘probably’ would. Hmmmm what to do. I am warned by Kaiser and Medicare that once I drop that secondary insurance (Blue Cross/Blue Shield) I can NEVER go back. And if Kaiser dropped the plan that I was on – I would only be left with Medicare. Oh nooooooo!

Yes, Medicare is going through its own morphing at this time as well. The new Prescription Drug program, which again, takes into account your income and your assets and goes by a percentage of all the drugs you need in a certain time frame blah blah de blah blah. Actually where I am at – between Medicare’s plan and Kaiser’s plan is that it is almost a wash as to whether or not to sign up for Medicare’s Prescription plan OR stay with Senior Advantage I through Kaiser. The small print always tells the real truth.

So, here I am, it’s April 2005 by now. I am finishing up my clinical trial with OHSU and I must make a decision. It’s crunch time and I decided to take the plunge to Kaiser. So as of April 1, 2005, I am on Kaiser – Permanente’s Senior Advantage I program. My Oncologist, Dr. Lacowski, said that the best place for me would be at OHSU for the duration of my illness. He said he would try to write referrals for me but couldn’t guarantee that Kaiser would pay. Well, we tried, and they didn’t. So I already have a few nice sized hospital bills at OHSU. But, so far nothing is as big and daunting as that humongous prescription bill every month I was faced with.

CURRENT NEWS
I am using the money from my $40,000 Leukemia Treatment Fund to pay some of my OHSU bills and my prescription Gleevec and Interferon. I take the Gleevec pills every day, with a meal, AND I give myself low dose Interferon shots 3 times a week. Sometimes my band mates and friends “help out” by giving me a shot in the butt. Certain band members find that kind of ‘fun’. Hmmmmm 

So, that’s my health plan. I go to Kaiser for regular blood draws every month and OHSU every 6 months for bone marrow biopsies and other specialized tests. I am so, so GRATEFUL to all of you for continuing to support me through prayers, well-wishes, emails, money and countless other ways. The Leukemia Fund you all helped build and are still regularly funding (you know who you are – thank you) is serving me quite well right now.

The financial ‘emergency’ state is hopefully behind me, and I am able to keep my home and some investments that will help me in the future. My health is stable at 99.9% remission of the CML Leukemia in my bone marrow as long as I continue to take the meds every day, for the rest of my life. The side effects are manageable as well and allow me to carry on my ‘normal’ life. The long range outlook is very good and I look forward to a long wonderful life.

I especially want to thank my caregivers – my daughter Laura, my Misty River and Misty Mamas band mates, Phyllis & Lois, and countless friends and fans. My family (Dad & Carol and my 4 brothers and sisters) have been most encouraging and helpful as well even though they live in Bend, OR, Long Beach, CA and in Arizona. And, most of all, I thank the good Lord above who deems that it is “not my time to go.” Hmmm that sounds like a lyric to a song I wrote…….stay tuned for some new material in our set lists!

As the year 2005 draws to a close, I have much to be grateful for and a great deal to look forward to. Misty River is moving ahead and I am booking us into 2007. The Misty Mamas provide musical challenges and lots of fun! And I continue to thank God every day for all the blessings in my life of which all of you are a part. God Bless and Happy New Year 2006!
- Love, Carol