Support for LateToSchool

[anitaw]

<p>I live in a country where we employ staff. Two years ago the 22 year old daughter of one of my staff developed non-Hodgkins lymphoma. There is no medical insurance of a general nature and naturally our employee was worried about how much it would cost to pay for the chemotherapy. I was worried about the quality of the chemotherapy she would get so we sent her to the national cancer center. The regime she received (of mostly generic forms of the standardized regime for her cancer) cost about $150-200/month which we paid for. Since these medications were mostly non-experimental/conventional they would have been among the least expensive in the US as well. But, I have to wonder what the similar 9 month regime would have cost in the US for this same diagnosis. While I still have concerns about the quality of therapy she received, she is alive, married and seems to be okay.</p>

<p>The tragedy of cancer is amplified by the commercialization of medical care everywhere a dollar can be made. It doesn’t have to be that way.</p>

[dmd77]

<p>AnitaW: my husband’s first round of chemo was quite cheap. That would be the CVP treatment you describe here (cyclophosphamide, vincristine, and prednisone). It was the second round–the one he had after his remission ended after only 1 1/2 years–that was really expensive. He had CHOP (Cyclophosphamide (also called Cytoxan/Neosar), Doxorubicin (or Adriamycin), Vincristine (Oncovin) and Prednisone) AND Rituxan. The Rituxan cost $5500/dose and he need 6 treatments. </p>

<p>Next time (if/when?), he’ll get one dose of Bexxar or Zevalin–at about $30,000 per dose.</p>

[latetoschool]

<p>I suspect that there are different prices for different people and situations for the exact same chemo. I tried and tried to get to the real bottom line of what mine costs, and, I couldn’t get a straight, clear answer no matter how hard I tried. There is evidently some sort of negotiation between the drug rep and the business office (???). What comes out on paper is $20K per treatment, and I’ll receive a total of six, so, $120K…</p>

<p>Because I was curious and wanted to see what would happen, some weeks ago I had my support staff call each national cancer center, say that they had been diagnosed with a different lung cancer, and try to get an appointment, and give me the outcome of each. She could get appointments at about half of them easily enough, but at a price. MD Anderson would like a $25,000 retainer for the initial appointment. Other centers are far less expensive but the upfront cash required is still huge if you’re assuming that an insured person also has very little cash; some refused to see her at all saying that since she was already in treatment they couldn’t, however, some got really inquisitive about her credit history etc. - I forget which two needed to know if she’d ever filed bankruptcy…</p>

<p>I’m thinking of having her call all of big pharma and see if she can piece together which may have charity programs and the like for the uninsured…</p>

[UCDAlum82]

<p>LTS, my husband is officially kicked off the study tomorrow. His red blood count was just too low. (Tomorrow he’ll be on his 6th blood transfusion in two weeks.) Now we’ll have to see what exciting new chemo drugs are out there. </p>

<p>For non-Hodgkins lymphoma, for patients like my husband with good insurance, the first choice of treatment at Stanford was 6 to 8 rounds of RCHOP mentioned by dmd77. At Stanford, it ran $20K a visit. It kept him in remission for 7 months. We never saw a bill for the second set of treatments, there were two inpatient chemo rounds, RICE, to get him into remission, followed by various drugs including terribly expensive nutroprin shots. (Some of which we still have in our fridge.) Followed by harvesting stem cells, and then more inpatient chemo and then putting the stem cells back. I suspect that was really expensive. And didn’t work. </p>

<p>Advantage of study drugs are the pharmaceutical companies pay for everything while you are on the study.</p>

[CountingDown]

<p>LTS, Novartis has programs for those who need Gleevec (and, I would assume, other drugs) and don’t have coverage… </p>

<p>UCBAlum82, Your DH’s company is an all-too-rare gem. Glad that you have one less thing to worry about…</p>

[fendergirl]

<p>depending on what kind of insurance you have, if you meet your out of pocket for the year you shouldn’t have to pay anymore… which it sounds like is what ucd has… but not all policies are like that… plus who knows what the cap may be on them.</p>

[poetsheart]

<p>What’s the incentive for “The Cure” if “treatment” is such a lucrative proposition for all involved (except the the patient, that is)?</p>

[Kelowna]

<p>poetsheart - your posting is scary. I am not a huge fun/supporter of pharmaceutical companies doings, but I still hope that humanity in all of us will prevail. I see cancer patients on a daily basis, and I have never heard that sentiment.</p>

[latetoschool]

<p>Poetsheart, that has been expressed by more than a few people, and my DEA friend is one of them. His daughter has a form of cancer that only something like 700 people in the country per year get diagnosed with - and therefore - in his opinion - no incentive for big pharma or anyone else to bother much with. </p>

<p>I think small cell lung cancer may be in the same sort of position - only 40,000 per year are diagnosed in the U.S.; most are > 60 years old, and, according to what I have read, 95% are smokers, and the disease is considered to be entirely preventable if people do not smoke. Since the numbers of smokers are dropping (this is great news even if it’s happening slowly), where is the incentive? It’s probably hard for big pharma to make a business case to bother with it. Collectively they can actually probably just take a position that smokers cause a huge cost on the economy etc., is it perhaps better to just let the lot of them die off, and instead put the research dollars into more profitable scenarios or at least into more marketable activities, such as childhood cancers, and the “no fault” cancers ie those that are not related to smoking. </p>

<p>UCDAlum82, I am sorry to hear this, but hopeful that a new treatment plan offers him success…</p>

[mythmom]

<p>Good morning, sweetie. I have to run to work, but wishing you a good, productive, peaceful, optimistic day. Playing “Good Day Sunshine” Beatles version, just for you.</p>

[NYMomof2]

<p>Poetsheart, much, if not most, of the research is being done in academic centers, mostly funded by the NIH. (I work in an academic center, and am funded by NIH.) I can tell you that most of these researchers are motivated by a burning desire to cure or successfully treat this horrible group of diseases, a burning desire to solve a fascinating intellectual problem, and, for some, a hope of attaining some personal glory. They are not making the kind of cold-hearted profit-maximizing calculations that LTS describes. The companies probably are.</p>

<p>This might be a good place to point out that the state of NIH funding is dire. Some labs have gone under, and many researchers are worried about losing a generation of young scientists, who are watching their mentors scramble for funding and wondering whether they want to try to survive in such an environment. One of their alternatives is industry. Calls to congresspeople expressing support for the use of tax dollars to fund health-related research are effective.</p>

[CountingDown]

<p>LTS,
Gleevec was developed under the orphan drug regulations because only about 4,000 people are diagnosed with it each year. As its success became clear with CML, researchers started looking at its potential for other diseases whose genetic markers, etc. indicate that Gleevec might prove beneficial – hence the success with it for GIST patients, and for other trials as well. What starts out as an orphan may ultimately be found to be useful across a broader spectrum. I grit my teeth at the cost of the drug, but know all too well that the cost of my Gleevec covers years of wandering in the desert looking for someone to make it a reality, as well a whole lot of research into the next generation of drugs that will help someone else. (Doesn’t mean I agree with Big Pharma, but I have more understanding for the R&D side than I used to. I still wrestle with how much ground-level health care could be provided with the $52K/year that my Gleevec costs, and what makes me so special vs. the many people that amount of $$ could help. )</p>

<p>UCDALum, Will they take your DH back into the study once his counts recover? I know folks who are in Phase I trials and the docs will modify all sorts of things (vary dosage, try Procrit, take a break to recover counts) to keep them in the protocol. How very frustrating for you – is there a known regimen he can go to now or are you faced with finding another trial?</p>

[epistrophy]

<p>

Four years ago, Jen McDevitt learned she had terminal brain cancer.</p>

<p>But she was determined to keep running her life at full speed – literally.</p>

<p>Last Sunday, the 33-year-old Palatine woman completed her fifth 26.2 mile race at the New York City Marathon.</p>

<p>“This is a celebration of life,” McDevitt said about her marathon runs. “I am continuing to live. I am not going to let this disease take over me. It messed with the wrong girl.”</p>

<hr>

<p>“I am going to run for every year as long as my brain allows me to and my feet allow me to,” McDevitt said. "I want people to realize that this disease is curable. My condition is stable. . . . My goal is to bother my son when he is a teenager and be a grandmother and all the normal things in life.</p>

<p>“You just should never give up and you have to believe.”

</p>

<p>[Cancer</a> ‘messed with the wrong girl’ :: CHICAGO SUN-TIMES :: Metro & Tri-State](<a href=“http://www.suntimes.com/news/metro/641211,CST-NWS-runner08.article]Cancer”>http://www.suntimes.com/news/metro/641211,CST-NWS-runner08.article)</p>

[ldmom06]

<p>lts - That’s very interesting information about retainers and fees. I think you are right, the price must vary by person and circumstance.</p>

<p>My mom and good friend are current MD Anderson patients (breast cancer), but neither have been required to put up a retainer. In fact, neither have yet to write a check for any expenses since the hospital has handled all insurance claims for them. My friend did start treatment at another hospital, and it took considerable effort to convince MDA to accept her as a patient, but the MDA oncologist went to bat for her and made it happen. I’m sure their reluctance is related to what they would consider tainted data since her initial treatment occurred outside of their control.</p>

[btm]

<p>Thank you, CountingDown. Very few people know about orphan drugs. Here is a good article for those ones who are interested:<br>
<a href=“http://medicina.kmu.lt/0706/0706-01e.pdf[/url]”>http://medicina.kmu.lt/0706/0706-01e.pdf&lt;/a&gt;

Alongside common and more well-known diseases, some 5000–8000 rare diseases (RDs) or disorders have been currently identified. Although affecting relatively few individuals compared to common diseases, in total they affect the lives of some 30 million Europeans and 25 million North Americans. Each week, five new pathologies are described worldwide, 80% of which have a genetic origin (1–3). The pharmaceutical industry is reluctant to develop medicinal products to treat such diseases (4), as the high costs involved will not be easily recovered. Thus, such products have come to be known as orphan drugs (ODs), such diseases orphan diseases, and the patient, a health orphan (5). This orphan syndrome is made even more acute by the lack of quality information available. Patients as well as their relatives can feel particularly isolated and vulnerable due to the disease rarity and sometimes even due to their physician’s lack of knowledge about their condition and available treatment (4); in fact, the rarer the disease, the scarcer the quality information about it. Furthermore, ** in developed societies, it is unjustifiable that certain categories of patients can be excluded from the benefits of scientific progress and research based on the pretext that the illness from which they suffer is rare (6). Societies all over the world face the challenge, with its countless scientific, medical, economic, and political aspects (7), of bringing efficacious, safe, and affordable medicines to patients in need **. Patients suffering from rare disorders should be entitled to effective and appropriate treatment

Orphan disease and orphan medicines in the light of legislation US legislation.
The scarcity of products to treat RDs, a worldwide problem, improved somewhat in 1983, when the US Congress passed the Orphan Drug Act (ODA). ODA defined a rare disease or disorder as one that affects less than 200 000 persons in the United States, or as one that even if affecting more than 200 000 persons, no reasonable expectation exists that costs of developing and distributing drugs will be covered solely from their sales (13). The ODA created other financial incentives for drug and biological product manufacturers to stimulate clinical research including tax credits, government grant funding assistance, and a 7-year period of exclusive marketing rights for the first sponsor of an orphan-designated product who obtains market approval from the FDA (14). **It has been deemed one of the most successful pieces of health-related legislation in US history thus far<a href=“15”>/b</a>. At the same time, FDA and National Institutes of Health (NIH) federal programs began to encourage product development as well as clinical research for products targeting rare diseases. In addition, the Rare Diseases Act and Rare Disease Orphan Product Development Act were signed into law in 2002. These acts established an Office of Rare Diseases within the NIH and authorized appropriations for Rare Disease Regional Centers of Excellence (16). Prior to the passage of ODA, approximately 10 drugs met the old definition of orphan drug and had been approved by the FDA (17). Since the implementation of ODA, 1697 medicinal preparations have been designated as orphan products, and with the number of approvals having risen substantially, approximately 10 drugs per year have been approved over the last 23 years (17, 18). As a result, more treatments are available to people affected by rare diseases who once had no hope for survival or improvement of their condition. ODA has resulted in the development of nearly 302 orphan drugs, which are now available on the market for a potential patient population of more than 12 million Americans

</p>

<p>Another rarely appreciate fact is that, as pointed out by CountingDown, many drugs were initially developed for an entirely different indication from the one they were ultimately approved for. Having said this, I found a very thorough analysis of drug discovery obstacles including regulatory problems, high attrition rates, changes in approach to management, pressure from shareholders and uneducated marketing approaches amongst the others. Orphan drug development, the role of small biotech companies and nonprofit institutions is also discussed. </p>

<p><a href=“http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1626142&blobtype=pdf[/url]”>http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1626142&blobtype=pdf&lt;/a&gt;

Despite striking advances in the biomedical sciences, the flow of new drugs has slowed to a trickle, impairing therapeutic advances as well as the commercial success of drug companies. Reduced productivity in the drug industry is caused mainly by corporate policies that discourage innovation. This is compounded by various consequences of mega-mergers, the obsession for blockbuster drugs, the shift of control of research from scientists to marketers, the need for fast sales growth, and the discontinuation of development compounds for nontechnical reasons. Lessons from the past indicate that these problems can be overcome, and herein, new and improved directions for drug discovery are suggested.

</p>

<p>My issue is that far too often R&D personnel (both scientists and management) are blamed for the problems outlined above.</p>

[latetoschool]

<p>UCDAlum82, I never though until Countingdown posted the question, if you do need to look for a new trial, can I put some resources on it for you? Since this thing is going to be a marathon and not a sprint, we’re getting really good at looking for stuff, in other countries even, and if we can look for stuff for other poeple we might as well do that too.</p>

<p>Of course, once we find stuff, we’re absolutely lousy at evaluating it, considering not a one of us are doctors or anything close to it. </p>

<p>We are also looking for alternative therapies - I am not sure what I think of that yet, but, it seems to me that chemo etc. might kill the symptoms, but doesn’t really impact the the origins of the cause of cancer. So no wonder such a high recurrance rate - I am not sure how to attack this but it seems to me to be just common sense that the answer lies in something outside of chemo, radiation, etc. There must be some way to change whatever it was that allowed cancer to happen in the first place. Otherwise, how in the world to hope to prevent recurrance? </p>

<p>Epistrophy, thank you so much for posting that. That helps me SO much, you have no idea how much. I do beleive that physical fitness is key to getting somewhere close to winning this. Nearly every day for some small amount of time - fortunately the duration is growing less and less - but anyway, a cold, paralyzing, chilling terror settles over me. It’s the horror and fear of the bad scans and the statistics, and it’s the horror of leaving so much unfinished, and the unthinkable and unimaginable reality of not being able to fulfill so many dreams, of leaving people, projects, and actions behind. Going for a hard run, swimming, and intense weight lifting quiets the horror, chases it back, makes it go away, at least for a little while. </p>

<p>A friend of mine here in D.C. is trying to get me to train for a marathon. She can run from my house to my new office in one hour (she runs the Marine Corp. Marathon). I am not ready to run in D.C. for marathon training (mostly because I am not used to the colder weather) but Saturday morning I’m going to try to walk-run the distance, with her supervising lol. </p>

<p>Countingdown, the cost of Gleeva sounds on par with the costs of some of the drugs used to stabilize non-small cell cancer. If it comes down to it, I plan to see if I can experiment with some of those drugs to fight my small cell cancer. You’re absolutely correct in that some of these drugs end up being very helpful for diseases that are very different than what they were originally developed for.</p>

[momof3sons]

<p>LTS,
Wondering how your “run-walk” went this a.m. in DC? Here’s hoping it was great and a wonderful reminder of what your body can accomplish. Have a great weekend!</p>

[NYMomof2]

<p>Yes, LTS, we’re all wondering how the session with your Marine friend went…</p>

[marite]

<p>Just checking in, hoping you had a good day.</p>

[latetoschool]

<p>LOL - well - I wish I could report that it was a successful event, but, truth is, Friday I spent the entire day and most of the evening in my new offices, working like a crazy person, with the intention to go shopping after my workday to buy warmer workout clothing. But then it was drizzly-rainy by the time I left my office, and, so I went straight home. This morning I woke up to overcast skies and 40 degrees. Definitely not what this Miami person is used to. Running/walking 90+ minutes in this with the clothing I brought from Miami = not happening. Sooooo…I went to a store that sells North Face, and I bought a LOT of warmer running clothes. Then I spent the rest of the day shopping…so…we have rescheduled for tomorrow morning. It is supposed to be a high of 50 tomorrow but no matter because at least I do have the clothing for it. </p>

<p>But I DID spend the entire day walking around various stores, so, at least I didn’t totally lose a day of exercise…</p>

<p>There is one problem I cannot figure out how to solve - I drink over a gallon of water a DAY, every day, trying to keep everything stable so that I can withstand the onslaught of chemicals, especially since I cannot know what may happen in terms of recurrance etc., but, it makes it difficult for going on long runs - at least in a gym environment or even running close to home it’s possible to visit the bathroom every 30 minutes…oh well…everything will work out I suppose…I’m going on the run, come what may - I may have cancer, but, the cancer does NOT have me :)</p>