Came across this today:
"NCCN Unveils Evidence Blocks for CML and Multiple Myeloma," NCCN press release, Oct 16, 2015 (link to original text of release).
Full text of press release:
The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 26 of the world's leading cancer centers, today unveiled its new value initiative—the NCCN Evidence Blocks™, published within new versions of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Chronic Myelogenous Leukemia (CML) and Multiple Myeloma.
“In cancer care, the most important value perspective is that of the individual patient,” said Robert W. Carlson, MD, chief executive officer, NCCN. “NCCN Evidence Blocks will educate providers and patients about the efficacy, safety, and affordability of systemic therapy, serving as a starting point for shared decision-making based on the individual patient’s value system.”
The announcement was made at the NCCN 10th Annual Congress: Hematologic Malignancies™ at the San Francisco Marriott Marquis. The NCCN Annual Congress focuses on the increasingly complex treatment of hematologic malignancies and new approaches that have been incorporated into patient management, including the use of drugs, biologics, and diagnostics.
The NCCN Evidence Blocks™ are published in a new version of the NCCN Guidelines and are intended as a visual representation of five key value measures that provide important information about specific Guidelines recommendations:
Efficacy of regimens,
Safety of regimens,
Quality and quantity of evidence for regimens,
Consistency of evidence for regimens, and
Affordability of regimens.
In a rapidly evolving field like oncology, thousands of new publications are released each year, adding to the existing body of knowledge and resulting in improvement in outcomes. In publishing the NCCN Guidelines, panel members are able to integrate new findings with existing information to determine what the evolving standard of care should be for a given disease state. Implicit in the evaluation of each treatment is the efficacy and expected associated toxicities, as well as the quality, quantity, and consistency of the evidence supporting the recommendation.
By adding affordability to NCCN’s existing criteria for evaluating treatment options, patients will be empowered to identify, alongside their physician, optimal treatment based on clinical and economic considerations that are of most value to them. The affordability measurement represents an estimate of overall total cost of a therapy, including but not limited to acquisition, administration, in-patient vs. out-patient care, supportive care, infusions, toxicity monitoring, antiemetics and growth factors, and hospitalization.
“Some patients will want an emerging therapy even with limited data; others will be most concerned about the expected side effects of the treatment indicated in the safety column. Still others may be very sensitive to cost,” Dr. Carlson said. “By considering the attributes of the range of possible therapies, the health care provider and the patient can discuss the benefits and drawbacks of each option and come to a decision most acceptable to the individual.”
By the end of 2015, NCCN expects to publish NCCN Evidence Blocks™ for systemic therapies (not surgery or radiation therapy) in the NCCN Guidelines for Breast, Colon, Non-Small Cell Lung, and Rectal Cancers; NCCN Evidence Blocks™ for systemic therapies are expected to be contained within the complete library of NCCN Guidelines by the end of 2016.
In addition to the usefulness of the conversation that the affordability dimension produces, the design of the resulting NCCN Evidence Blocks™, with its signature blue squares, provides oncologists a valuable reference.
“In an age of visual information, the NCCN Evidence Blocks™ are a time-saving tool for efficient scanning and interpretation of multiple therapy options in an efficient format,” said Dr. Carlson.
The concept of NCCN Evidence Blocks™ was first announced in March 2015 during the NCCN 20th Annual Conference: Advancing the Standard of Cancer Care™ in Hollywood, Florida.
The NCCN Guidelines are the recognized standard for clinical policy in cancer care and are the most thorough and most frequently updated clinical practice guidelines available in any area of medicine. Available free of charge to registered users of NCCN.org, the NCCN Guidelines cover 97 percent of all patients with cancer.
In the near term, NCCN will continue to publish two sets of NCCN Guidelines: those including NCCN Evidence Blocks™ and those published without. The NCCN Evidence Blocks™ are not currently published in the NCCN Guidelines for Patients®, and are intended for use in the United States only.
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Re: Treatment "Evidence Blocks" from the NCCN
This is a very difficult and important discussion, also in countries like the Scandinavian where all treatment is free for the patient.
As it is now almost any treatment that is tested and approved and regarded relevant/needed for the individual patient is available.
New and extremely expensive treatments, also for conditions that was previously untreatable and where only palliative treatment was available, are putting the system under pressure.
As it is now the cost is going up every year, not just in a "normal" curve. The costs are exploding.
Some national economists (right word?) have questioned the realism in just paying for the any novel treatment and have asked for models weighing benefits, side effect/risk up against the cost.
But as soon as it get down to "should we pay 800.000 to let this mother of 3 live a little bit longer, the politicians are of course backing of, at least publicly.
The conflict is hidden under the surface. But probably not forever.
A problem is also that because Denmark, as most other democracies, is a strong believer in the free market we are expecting the market to regulate the prices. And when a specific treatment is only available from one source this is creating a situation where there are no market.
The negotiation power of a small state like the Danish is probably also limited.
Thus the prices paid to the medical corporations in Denmark are often much higher than those paid for the same medicine in other countries.
The hidden conflict that may very soon come to the surface is seen as between the politicians who must make the ends meet and the patients who like "you and me" want everything with just the slightest hope for some more years to live. And please do not misunderstand me, I am not being ironical here. I my self want every chance given to me!
The question raised by BN is relevant but tough!
But is it possible to set up the formula that the NCCN and the financial experts ("the calculator kids" as they are called in the Danish public debate) would like?
Is it not an artificial method to try to avoid the real discussion and to make the doctors and administrators and in the US the insurance companies who make the choices "innocent" ... "It is not me, the calculation says" ...
Why do we not discuss the prices of the medication and the model for setting the prices.
Denmark has a very large medical industry, Novo Nordic is just one of the Danish companies. All their Danish researchers got their education for free and they even got grants to help them through the studies without nescessarily needing money from mother and father. Without this large pool of highly educated experts there would be no science. And the industry also benefit from the research at the universities and the large research hospitals.
The industry need to be profitable. But at the same time they are strongly dependent of and using the public funding of some of the strong and healthy European welfare states.
Do we, as patients who's life is at the line here need to start to re-focus the search light towards those who are actually setting the price for another 6 or 20 months survival, or for the new treatment with fewer side effects?
BN, you asked, an since it is a very difficult question I could not answer it short. I am not even really sure about my own opinion.
And English is definitely not my first or second language, so I hope that I am not causing to many misunderstandings.
Best regards
Lev
As it is now almost any treatment that is tested and approved and regarded relevant/needed for the individual patient is available.
New and extremely expensive treatments, also for conditions that was previously untreatable and where only palliative treatment was available, are putting the system under pressure.
As it is now the cost is going up every year, not just in a "normal" curve. The costs are exploding.
Some national economists (right word?) have questioned the realism in just paying for the any novel treatment and have asked for models weighing benefits, side effect/risk up against the cost.
But as soon as it get down to "should we pay 800.000 to let this mother of 3 live a little bit longer, the politicians are of course backing of, at least publicly.
The conflict is hidden under the surface. But probably not forever.
A problem is also that because Denmark, as most other democracies, is a strong believer in the free market we are expecting the market to regulate the prices. And when a specific treatment is only available from one source this is creating a situation where there are no market.
The negotiation power of a small state like the Danish is probably also limited.
Thus the prices paid to the medical corporations in Denmark are often much higher than those paid for the same medicine in other countries.
The hidden conflict that may very soon come to the surface is seen as between the politicians who must make the ends meet and the patients who like "you and me" want everything with just the slightest hope for some more years to live. And please do not misunderstand me, I am not being ironical here. I my self want every chance given to me!
The question raised by BN is relevant but tough!
But is it possible to set up the formula that the NCCN and the financial experts ("the calculator kids" as they are called in the Danish public debate) would like?
Is it not an artificial method to try to avoid the real discussion and to make the doctors and administrators and in the US the insurance companies who make the choices "innocent" ... "It is not me, the calculation says" ...
Why do we not discuss the prices of the medication and the model for setting the prices.
Denmark has a very large medical industry, Novo Nordic is just one of the Danish companies. All their Danish researchers got their education for free and they even got grants to help them through the studies without nescessarily needing money from mother and father. Without this large pool of highly educated experts there would be no science. And the industry also benefit from the research at the universities and the large research hospitals.
The industry need to be profitable. But at the same time they are strongly dependent of and using the public funding of some of the strong and healthy European welfare states.
Do we, as patients who's life is at the line here need to start to re-focus the search light towards those who are actually setting the price for another 6 or 20 months survival, or for the new treatment with fewer side effects?
BN, you asked, an since it is a very difficult question I could not answer it short. I am not even really sure about my own opinion.
And English is definitely not my first or second language, so I hope that I am not causing to many misunderstandings.
Best regards
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Treatment "Evidence Blocks" from the NCCN
Lev, Quick question....when a drug is approved by the European Union, as Kyprolis was recently, is not a price set at that point? From your post, it seems that each individual country has to negotiate a price. In Canada, there is one price negotiated, if the drug is deemed to be approved for funding. That is not a given, since a drug may be approved by Health Canada, but not funded. Provinces may not have the drug in their formulary until it has passed through the Cdn. Agency for Drug and Health Technology.
A price negotiated by a larger population could be more reasonable than for just one area at once. As myeloma patients, who have a disease known for relapse, of course we want to have access to treatments different to those we may have become resistant or refractory to. I think that the high cost is why some of the new treatments are only indicated for relapsed patients, Not as many patients would need to have access to the more expensive treatments.
But that is not as profitable for drug companies, who operate on patent regulations that extend about 20 years. If about 7 years of the patent is used in preparing the drug for market and getting it out there to patients, then of course they would like to have a broader market, e.g. newly diagnosed patients. I guess that is why we see clinical trials for both relapsed and newly diagnosed patients for the same drug.
I don't know what the answer is, but as a patient would like eventually to have access to the newer drugs if needed. This includes several different categories of meds including IMID's, proteasome inhibitors, and monoclonal antibodies, (plus probably more categories that I am unfamiliar with). it is odd that some of the drugs such as Thalomid and Dexamethasone are actually really inexpensive, but the newer chemotherapies are really expensive!
What are 'Evidence Blocks', and how will they be used to determine treatment?
A price negotiated by a larger population could be more reasonable than for just one area at once. As myeloma patients, who have a disease known for relapse, of course we want to have access to treatments different to those we may have become resistant or refractory to. I think that the high cost is why some of the new treatments are only indicated for relapsed patients, Not as many patients would need to have access to the more expensive treatments.
But that is not as profitable for drug companies, who operate on patent regulations that extend about 20 years. If about 7 years of the patent is used in preparing the drug for market and getting it out there to patients, then of course they would like to have a broader market, e.g. newly diagnosed patients. I guess that is why we see clinical trials for both relapsed and newly diagnosed patients for the same drug.
I don't know what the answer is, but as a patient would like eventually to have access to the newer drugs if needed. This includes several different categories of meds including IMID's, proteasome inhibitors, and monoclonal antibodies, (plus probably more categories that I am unfamiliar with). it is odd that some of the drugs such as Thalomid and Dexamethasone are actually really inexpensive, but the newer chemotherapies are really expensive!
What are 'Evidence Blocks', and how will they be used to determine treatment?
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Treatment "Evidence Blocks" from the NCCN
Nancy,
In regard to Krypolis the Committee for Human Medicinal Products (CHMP) within the European Medicines Agency has given a positive view of it but the European Commission has yet to give a licence for its use.
In the UK there is concern that our health system is paying too high a price for cancer drugs and they do not negotiate the best rates. lower prices are noted in other countries. Each health system negotiates a price with the drug company for access to drugs. How available the drug actually becomes in any country is increasingly defined by the ability of the health system to fund the drug for all those who might benefit.
I expect the Evidence Blocks are like the UK National Institute for Care and Excellence (NICE) heath treatment appraisals. NICE makes decisions about cost, quality life years and whether and in what circumstances treatments are justified on the basis of clinical evidence and cost effectiveness. NICE sets guidelines for clinicians on treatments that can be funded in specific circumstances.
I take the view that a compassionate civilised society with the ability to treat a disease is morally wrong not to do so when treatment is possible. There is no point in cancer research or drug developments otherwise. No one can accurately predict how long someone will live with with / without some particular treatment
Questions such as how you decide one illness can be treated and another cannot, when if you did not treat either the people involved will die? On a cost basis? That to me is morally wrong.
An issue too relates to increasing numbers of financially better off families, (who take expensive holidays, buy and pass down property to children, send children to private schools etc.), in countries where the health system is 'free'. Should they be expected to create and use personal wealth for themselves and families and have free health care too? They might afford to pay privately for expensive drugs to extend their lives instead of creating family wealth.
In countries where the system is not free or insurance significantly limits what is available in terms of treatments people do not have access to the plethora of e.g. myeloma treatments as say in the USA.
I have begun to realise the dire situation in the UK. Advocacy is unlikely to change things because we have an 'elite' governing the country, feathering the nests of cronies and wealthy like themselves. The amount of taxes wasted on personal or pet projects of the elite and well connected is vast here. Services are diminishing greatly. The assisted dying bill is an example of how things have moved here. The goal posts have changed from celebrating life and longer life to encouraging its termination.
As a sophisticated thinker I realise humanity is dying fast because of the way people think and behave around money / resources, at personal level, local community / service level and at national systems level. We, collectively, have created this society.
Edna
In regard to Krypolis the Committee for Human Medicinal Products (CHMP) within the European Medicines Agency has given a positive view of it but the European Commission has yet to give a licence for its use.
In the UK there is concern that our health system is paying too high a price for cancer drugs and they do not negotiate the best rates. lower prices are noted in other countries. Each health system negotiates a price with the drug company for access to drugs. How available the drug actually becomes in any country is increasingly defined by the ability of the health system to fund the drug for all those who might benefit.
I expect the Evidence Blocks are like the UK National Institute for Care and Excellence (NICE) heath treatment appraisals. NICE makes decisions about cost, quality life years and whether and in what circumstances treatments are justified on the basis of clinical evidence and cost effectiveness. NICE sets guidelines for clinicians on treatments that can be funded in specific circumstances.
I take the view that a compassionate civilised society with the ability to treat a disease is morally wrong not to do so when treatment is possible. There is no point in cancer research or drug developments otherwise. No one can accurately predict how long someone will live with with / without some particular treatment
Questions such as how you decide one illness can be treated and another cannot, when if you did not treat either the people involved will die? On a cost basis? That to me is morally wrong.
An issue too relates to increasing numbers of financially better off families, (who take expensive holidays, buy and pass down property to children, send children to private schools etc.), in countries where the health system is 'free'. Should they be expected to create and use personal wealth for themselves and families and have free health care too? They might afford to pay privately for expensive drugs to extend their lives instead of creating family wealth.
In countries where the system is not free or insurance significantly limits what is available in terms of treatments people do not have access to the plethora of e.g. myeloma treatments as say in the USA.
I have begun to realise the dire situation in the UK. Advocacy is unlikely to change things because we have an 'elite' governing the country, feathering the nests of cronies and wealthy like themselves. The amount of taxes wasted on personal or pet projects of the elite and well connected is vast here. Services are diminishing greatly. The assisted dying bill is an example of how things have moved here. The goal posts have changed from celebrating life and longer life to encouraging its termination.
As a sophisticated thinker I realise humanity is dying fast because of the way people think and behave around money / resources, at personal level, local community / service level and at national systems level. We, collectively, have created this society.
Edna
Re: Treatment "Evidence Blocks" from the NCCN
Thanks, Edna and Lev, for the information regarding myeloma treatments in the EU. As a patient advocate, I find all of this information to be useful when working on committees with my local support group and also nationally. I found that after six years of survivorship, I have studied the subject quite a lot and am able to have 'patient input'. Thanks also to the Beacon for providing the forum so that we may exchange our news and opinions!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Treatment "Evidence Blocks" from the NCCN
Nancy, as a once cancer research scientist, I wish you success in the patient advocacy role.
If the Canadian Health system can find resources and approve expensive FDA approved cancer treatment drugs, then your advocacy can be successful. But, other cancer organisations / patients, with different rare and expensively treated cancers, will also advocate for their needs this 'competition' with finite resources poses challenges.
If the Canadian Health system can find resources and approve expensive FDA approved cancer treatment drugs, then your advocacy can be successful. But, other cancer organisations / patients, with different rare and expensively treated cancers, will also advocate for their needs this 'competition' with finite resources poses challenges.
Re: Treatment "Evidence Blocks" from the NCCN
Thanks Edna for your well wishes. I think that with your breadth of knowledge, having been a research scientist, you would be good at this type of volunteer work. I did train as a research technician, and worked in a microbiological research lab, decades ago! After the initial shock of having myeloma subsided, and I found that my treatments had been successful so far, I realized that perhaps I could use my science background to study the treatments too. So I do write letters to government agencies, along with my support group, and have studied the route by which drugs are approved in our country, whether they come in from elsewhere or are developed here. Canada is a much smaller market by population than is the EU. Actually the EU is a preferred market, along with the US, to get drugs approved, so you have more in your pipeline than we do right now I think!
Pomalyst was approved and is funded in most provinces, just this year. That gives me hope that gradually other new drugs will also be approved too, such as Kyprolis.
I am just a volunteer, and only have a limited amount of spare time, so can't do too much at once. I am also interested in the concept of rare diseases being funded, such as is the case with the orphan diseases concept in the US. Here there is an organization called CORD, the Canadian Organisation for Rare Diseases, which advocates for medical access to rare diseases. There are thousands of rare diseases, and the patients often can't get funding for their expensive meds. Myeloma is a rare disease too, as well as being a blood cancer. Is there a similar organization in the UK?
I think that citizens of a democratic country basically can have some influence of how their tax dollars are spent. Whether that is thru the ballot box, or by advocacy, there is no harm in having some input. As they say 'One letter is worth 12 votes!".
Pomalyst was approved and is funded in most provinces, just this year. That gives me hope that gradually other new drugs will also be approved too, such as Kyprolis.
I am just a volunteer, and only have a limited amount of spare time, so can't do too much at once. I am also interested in the concept of rare diseases being funded, such as is the case with the orphan diseases concept in the US. Here there is an organization called CORD, the Canadian Organisation for Rare Diseases, which advocates for medical access to rare diseases. There are thousands of rare diseases, and the patients often can't get funding for their expensive meds. Myeloma is a rare disease too, as well as being a blood cancer. Is there a similar organization in the UK?
I think that citizens of a democratic country basically can have some influence of how their tax dollars are spent. Whether that is thru the ballot box, or by advocacy, there is no harm in having some input. As they say 'One letter is worth 12 votes!".
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Treatment "Evidence Blocks" from the NCCN
Hello Nancy,
Like you I 'continually raise matters, including letters to key politicians / government departments and cancer organisations. Yes my background means I am not a layman exactly, having worked in the health system too. I have raised concern regarding the proposal to further limit the availability of Pomalyst and Revlimid on relapse.
There is a rare diseases group in the UK but I know nothing of its activities, and we have a national organisation that advocates for myeloma, including funding of clinical trials. Most rare cancer charities advocate in isolation, so compete for resources in isolation and competition.
But unlike you I have no supporting family / circle of friends and do all for myself alone. I have indicated before that I was a 24/7 carer / power of attorney for very aged parents during my illness and their illnesses, until they passed away this year. So my life was focused on them more than my disease, until recently. I might wish, but do not expect, to be a long term survivor, so I set key priorities for myself. Spending time with organisations is not one of them. I respect your right to do so to meet your needs as a myeloma patient.
Edna
.
Like you I 'continually raise matters, including letters to key politicians / government departments and cancer organisations. Yes my background means I am not a layman exactly, having worked in the health system too. I have raised concern regarding the proposal to further limit the availability of Pomalyst and Revlimid on relapse.
There is a rare diseases group in the UK but I know nothing of its activities, and we have a national organisation that advocates for myeloma, including funding of clinical trials. Most rare cancer charities advocate in isolation, so compete for resources in isolation and competition.
But unlike you I have no supporting family / circle of friends and do all for myself alone. I have indicated before that I was a 24/7 carer / power of attorney for very aged parents during my illness and their illnesses, until they passed away this year. So my life was focused on them more than my disease, until recently. I might wish, but do not expect, to be a long term survivor, so I set key priorities for myself. Spending time with organisations is not one of them. I respect your right to do so to meet your needs as a myeloma patient.
Edna
.
Re: Treatment "Evidence Blocks" from the NCCN
Nancy Shamanna asked
You are right, the countries in the union do approval together, but pricing is individual.
The health systems of the different countries in the union have nothing to do with each other.
when a drug is approved by the European Union, as Kyprolis was recently, is not a price set at that point? From your post, it seems that each individual country has to negotiate a price.
You are right, the countries in the union do approval together, but pricing is individual.
The health systems of the different countries in the union have nothing to do with each other.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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