I seldom contribute here anymore but still receive posts from the group in a lurking capacity. Please forgive my lack of recent contribution but once in a great while I find a post like Daniel Brown's that I simply cannot ignore without comment.
After my CML diagnosis is 2001 I started a successful stint on Gleevec until 2004 when my PCR's began showing signs of a gradual resistance to the drug and my numbers started creeping up again. At that time only clinical trials existed for the newer meds so that year we decided to take a chance with a transplant before my condition weakened to the point where a transplant would be far riskier. The result was my full blown matched unrelated donor transplant at the Fred Hutchinson Cancer Research Center in Seattle Jan 2005. I'm 6 years post transplant now and still CML free, doing well. It is there at "The Hutch" that we witnessed some of the horrors people in the last days of their lives endured while insurance companies played "that's not my problem" with the fully insured. We witnessed dying and crying patients and family members begging and pleading for coverage of essential procedures and medications during the many stages of transplant only to find their insurance provider had spent considerable time and effort finding loopholes in policies that supposedly got them off the hook. We saw entire families, insured and uninsured, who had sold every belonging they owned, maxed every credit card they could apply for and mortgaged and sold homes to insure the survival of their daughter, son, father or mother. In many cases the family breadwinner had lost their job because the burden of being a caregiver has not allowed a return to work. It's quite surreal to see a family of four living out of suitcases that literally carry every material possession they own whose very lives are all in limbo waiting for their father to either recover or die. I often see posts here by folks who struggle with the costs of high- end CML meds and the strain it puts on their budget. Imagine having to front much of the cost of a $750,000 bone marrow transplant because insurance has decided they are not going to pay for essential procedures such as a $85,000 Hickman catheter operation or has decided that according to the policy the time spent at the facility has exceeded the covered time span and that any further treatment must be paid for out of pocket by a family that has not a single penny left to their name. We witnessed both of these scenarios during our 4 month stay in Seattle and beleive me people lose their lives frequently there because they SIMPLY CANNOT AFFORD TO LIVE ANYMORE. Of course none of what we witnessed there includes those who are uninsured and simply could not afford a transplant and rely on donations, fundraisers and the few pro bono doctors and facilities who are actually willing to treat advanced Leukemia without compensation. We have a young friend who works at Copper Mountain Resort here in Colorado who's name is Kevin. Kevin being a relatively new employee at Copper was not offered any type of company sponsored insurance when he was diagnosed with Non Hodgkins Lymphoma a couple of years ago. His doctor told him without insurance he simply could not refer him to an oncology department at any hospital without insurance coverage but he had heard of a doctor in the Vail area that was developing an advanced technique for treatment and might be willing to work pro bono if Kevin could pay for part of the medications. It's working, but 24 year old Kevin has had to file bankruptcy and has little material posession at all. Fortunately he is able to live in affordable employee housing at Copper and relies on public transportation for most of his needs. Unfortunately in this Country today we have people like Daniel, who obviously have little experience, contact nor compassion for potentially uninsured people making moral and ethical decisions about peoples lives based solely on a bean counter's mentality. Who honestly beleive one can show up uninsured at an emergency room and be treated for CML. Who believes the L & L foundation takes requests for the uninsured who need treatment. Who beleive kind hearted institutions all over the nation simply treat Leukemia because it's the right thing to do. Believe me Daniel everyone appreciates the work that St. Jude's does for pediatric cancers but you can well beleive if their considerable portfolio, including large contributions from our government, would not allow for treating the uninsured they would be ignoring them along with the other 99% of all hospitals in our country. We live during a time when a group of government employees were fortuitous enough and had the courage and foresight to enact much needed change to a health care system that, despite being situated in the richest most powerful country on the planet earth, could not even provide basic health care needs for those who could not afford it and were shunned by corporate America for because the very conditions they needed coverage for existed at the wrong time in their lives. We live during a time when, as insurance premiums for health care coverage more than tripled for those who could least afford it, the wealthiest 1% of all American citizens paid less income tax than at any time in our country's history. Tax money that was previously used to fund essential government programs for the very group of people that without whom the 1%'ers could not exist at all. Please Daniel, for the sake of those who truly suffer in this county because of the lack of insurance, educate yourself and spread the word to others who honestly haven't a clue what it must be like to lose one's home because of an inability to pay medical bills. Ask yourself, should that REALLY be happening in THIS country? On Feb 7, 9:55 am, Daniel Brown <[email protected]> wrote: > The answer to your question is "yes" I had insurance that I paid for, for 30 > years before I needed it. However, the beauty is, that even if I hadn't had > the insurance, I would have been treated the same way because I was in > critical condition when diagnosed and no one had time to see if I had > insurance. White count of 360,000, enlarged spleen, skin color grey because > there wasn't any room for the red blood cells to carry the oxygen to my body. > > Did you know that an E.R. physician isn't supposed to know you insurance > status when he or she treats you, to insure that you receive the same level > of healthcare as the insured? Now the hospital may know, but the physician is > supposed to be kept in the dark intentionally. Do you think that when a > person is brought in from a car accident that the hospital determines your > insurance status prior to taking them up to the O.R. for emergency surgery? > > Then there are such volunteer organizations as the Leukemia and Lymphoma > Society and other organizations that can assist those without the means to > meet the costs. Look at St.Judes in Memphis that treat 1000's of children > with all types cancer completely free every year, and there are other > facilities around the country that do the same. This is one the most state of > the art facilities in the world. There is also Medicaid, that also covers the > very poor. Then the drug companies themselves donate millions of $ for those > without the means. > > No, this doesn't cover everyone, but I haven't heard of anyone in the U.S. > that has died due to a lack of medication for our cancer. I'm not saying it > hasn't happened, but you would think there would be lots of people to point > it out as an example of our ruthlessness. > On Feb 7, 2011, at 9:25 AM, Victoria Reiter wrote: > > > Daniel Brown: It is wonderful that you were diagnosed at 11 a.m. and in the > > hospital by 12:30 and began treatment shortly thereafter. Did you pay for > > this out of pocket or did you have health insurance to pick up a good part > > of the tab? VReiter > > > On Sun, Feb 6, 2011 at 5:24 AM, <[email protected]> wrote: > > Today's Topic Summary > > Group:http://groups.google.com/group/cmlhope/topics > > > Kareem Abdul Jabbar...100% cancer free? [2 Updates] > > Digest for [email protected] - 4 Messages in 2 Topics [2 Updates] > > Topic: Kareem Abdul Jabbar...100% cancer free? > > sweetbluemusic2002 <[email protected]> Feb 05 02:37PM -0800 ^ > > > Here's one of the articles on it. > > >http://lakersblog.latimes.com/lakersblog/2011/02/kareem-abdul-jabbar-... > > > I'm a little concerned after reading this. I explain to my family and > > friends all the time that while being on the daily medication is > > keeping the CML at bay, it's not a cure. I think his announcement is a > > dangerous one if anyone with CML reads it and thinks they can simply > > go off their meds because their numbers are good. > > > From my understanding you're right a BMT is the only known cure... and > > while some have gone off their meds and their numbers have stayed > > low... that is not the typical result. I wish someone would write more > > information about it! Did he do a trial? > > > [email protected] Feb 06 01:25AM ^ > > > Anyone that thinks they are "100% Cancer Free" and say the following are > > saying two different things: > > He told The Times' Broderick Turner at the time that the long-term > > prognosis regarding his health was good and that he could manage his > > condition by taking oral medication on a daily basis, consulting his > > specialist every other month and frequently getting his blood analyzed. > > > This is what all us CLMers do and we are not "Cancer Free" we are in > > remission until we stop taking the meds. It's amazing how quickly the > > numbers go up when you stop the medication. > > Lenda > > ----- Original Message ----- > > From: "sweetbluemusic2002" <[email protected]> > > To: "CMLHope" <[email protected]> > > Sent: Saturday, February 5, 2011 4:37:18 PM > > Subject: [CMLHope] Re: Kareem Abdul Jabbar...100% cancer free? > > > Here's one of the articles on it. > > >http://lakersblog.latimes.com/lakersblog/2011/02/kareem-abdul-jabbar-... > > > I'm a little concerned after reading this. I explain to my family and > > friends all the time that while being on the daily medication is > > keeping the CML at bay, it's not a cure. I think his announcement is a > > dangerous one if anyone with CML reads it and thinks they can simply > > go off their meds because their numbers are good. > > > From my understanding you're right a BMT is the only known cure... and > > while some have gone off their meds and their numbers have stayed > > low... that is not the typical result. I wish someone would write more > > information about it! Did he do a trial? > > > -- > > [CMLHope] > > A support group ofhttp://cmlhope.com > > ------------------------------------------------- > > > You received this message because you are subscribed to the Google Groups > > "CMLHope" group. > > To post to this group, send email to [email protected] > > To unsubscribe from this group, send email to > > [email protected] > > For more options, visit this group athttp://groups.google.com/group/CMLHope > > > Topic: Digest for [email protected] - 4 Messages in 2 Topics > > Minsu KYEONG <[email protected]> Feb 04 08:21PM -0800 ^ > > > Daniel, > > > Will you take some time looking at the health care reform act? > > > I know why you have such abhorrance against government doing anything. > > But think about whether private-is-all-efficient rule is another > > propaganda. > > > From the point of view of a foreigner who once lived in the U.S., the > > country has one of the worst health insurance systems and I feel > > relieved that the health care reform act made it at least a little > > better. And I hope you will realize it soon and add a helping hand in > > making it better. > > > Daniel Brown <[email protected]> Feb 05 05:04PM -0600 ^ > > > Don't hold your breath. > > > I have never wanted to be dependent on any government for my needs. > > Governments through the history of man, have always turned tyrannical (name > > 1 that didn't), and our founders knew that, and tried to create a system > > that left the individual responsible to determine their own fate and > > "pursuit of happiness", not the government. Doesn't it bother anyone that a > > union that donated 70 million dollars to the present presidents campaign, > > gets special dispensations from this administration, and that this > > government is going to FORCE you to buy something you may not want or need? > > By the way is that a tax? > > > I also know that each one of us is surviving because of the best healthcare > > system in the world, bar none. Canada's socialist system has waiting lists > > for tests and procedures of up to six months. If they need an CT, well, > > that will be a 6 month wait. If the CT finds a brain tumor that will be > > another 6 month wait. It is so bad right now that even the Canadian Supreme > > court has ruled that being placed on a waiting list isn't access to > > healthcare. If you doubt me copy and paste > > linkhttp://neamh.cns.uni.edu/MedInfo/canadian_healthcare.html. Let me ask > > you a question, how long did you have to wait for healthcare when you were > > diagnosed with CML? I for one was diagnosed at 11:00 am and was admitted to > > the first local hospital by 12:00 noon and to the second hospital 250 miles > > away by 11:00 PM that same day, and treatments started by midnight, lets > > see that happen in England or Canada or anywhere else. It is one of the few > > things that this country maintains it superiority over every other country > > in the world, yet we want to fix it? > > > Does it not bother you that the healthcare bill is probably > > unconstitutional? Our constitution was meant to limit what government can > > do to us and/or for us. Don't bother saying that we are already forced to > > by auto insurance so whats the difference? The difference is that mandatory > > car insurance is required by the states not the federal government. Look, > > our constitution was created to protect us from government. Now your going > > to trash it? When I was in the military in1967, I swore to protect and > > defend the constitution of the United States of America, and I don't > > believe there was a statute of limitations on that oath. The same thing > > goes for our elected officials when they took office. > > > We are presently bankrupt as a country, yet we are creating the biggest > > entitlement program we have ever tried. Right now, the gross national > > product ( the total of everything produced in this country in goods and > > services) is $14,500,000,000,000. Do you know how much our country is in > > debt right now $14,100,000,000,000. Take a look for yourself. > > >http://www.usdebtclock.org/ > > > Just to give you some idea of the size and scope of this program, try this > > on for size. The largest salaried organization in the world is the Chinese > > Army. No real surprise there is it? The second largest is the Indian > > railroad. Who would have thought that India's railroad was that big? Are > > you ready for the third largest employer in the world? The British > > healthcare system!!! Does that give you any concept of what this healthcare > > bill takes over and just how big it will be and much it will cost? > > > Right now, the federal government subsidizes, (depending on the state) up > > to 2/3 of the state Medicaid cost for the individual states. For example, > > if state X contributes 1.5 Billion dollars to the State Medicaid program, > > the Federal government will contribute an additional 3.0 Billion. You may > > say so what? Well Medicaid will be doubled in size under the federal > > healthcare bill and within 5 years, the states will be left to fund the > > full thing without any federal matching funds (you may remember Nebraska > > was almost exempted). So just how much will your state have to raise your > > taxes to pay for that new state program. The pity to this little jewel, is > > that this > > ... > > read more » -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
