Lymphoma einformation Project (LeIP)

Transcription

1 Lymphoma einformation Project (LeIP) DEMOGRAPHICS & ACCESS TO TREATMENT 2012 Lymphoma Situation Analysis Report Worldwide Network of Lymphoma Patient Groups This report is a call for the lymphoma community to come together to ensure that a consistent, accurate and current flow of information be developed so all parties will be informed.

2 CONTENTS 1 INTRODUCTION FINDINGS 2 TRENDS IN INCIDENCE AND MORTALITY CLINICAL TRIAL WEBSITE AVAILABILITY BY COUNTRY STANDARD OF CARE 3 LYMPHOMA TREATMENT APPROVAL 4 LYMPHOMA DEATH RATES 5 CONCLUSIONS RECOMMENDATIONS REFERENCES

3 INTRODUCTION Based on the premise that tracking progress saves lives, the Lymphoma Coalition (LC) believes that lymphoma patient organisations, the healthcare community and hence patients all have the right to be able to access up to date information that would provide a demographic picture of lymphoma subtypes around the world. For in this way, each subtype would then be referred to and understood as being an individual cancer rather than being categorically referred to as lymphoma in general. Advancements in medical research in recent years have led to the identification of increasing numbers of smaller and more fragmented lymphoma subtype populations for which it has become increasingly difficult to develop cost effective therapies particularly with the increasing lack of patients available for clinical trials. The availability of subtype demographic information being proposed in this report would enable lymphoma communities around the world, including patient organisations, to track the progression of lymphoma subtypes and the effectiveness of new therapies, as well as advocate for the development of new therapies through more global collaboration. It was hypothesized by LC that any of the existing demographic information thus required would either be out dated, fragmented, globally inconsistent or simply not available at all. Therefore, the goal of Phase I of LeIP was to provide a situation analysis of available demographic information by subtype, highlighting any deficiencies in this information with the hope and expectation that this reporting will change. It was determined this could best be achieved through the creation of a chart that would capture this information for 40 of LC s member organisations for Follicular, Diffuse Large B Cell, TCell, CLL and Hodgkin lymphoma subtypes, focusing on factors such as population, incidence, mortality, prevalence, GDP and healthcare system, and be housed and maintained on the LC website. Only LC member countries were chosen in Phase I of LeIP to ensure that any information gathered would be useful and where possible, actionable. In future phases it is the intention of LC to investigate the feasibility of gathering this information and to perform an analysis for countries outside the Coalition as well as including additional lymphoma subtypes. FINDINGS Current, country specific information proved to be difficult to find during searches of approximately 650 websites referred by our coalition partners, key opinion leaders as well as those completed by our researcher for databases, scientific sources, scholarly and government sites with the exception of Canada and the United States. It was also determined during this search of secondary information sources that the latest information is being produced and published every 5 years by Globocan, a subsidiary of the World Health Organization. The latest available information by member country for GDP (US$), lymphoma 5 year prevalence and lymphoma incidence and mortality for non-hodgkin lymphoma and Hodgkin lymphoma (not including CLL), is generally available for However, 2012 statistics for incidence are available for both Canada and the U.S., and mortality for the U.S. only as shown in Table 1, below data for all LC member countries for population, standards of care, clinical trials, lymphoma treatment approval status, and health care systems was available in disparate sites on the internet. Table 1 - Most Recent Demographic Data Available by LC Member Country As anticipated, the information in question was not available by subtype and was found to be combined under non-hodgkin lymphoma and Hodgkin lymphoma. To further complicate matters, although the medical community advised that CLL is actually a lymphoproliferative disorder those demographics in most cases are combined with those of leukemia. While complete results of our findings for current global demographic information are presented in chart form on the LC website (1) we were able to perform some analysis on this data for est., as described below. Lymphoma einformation Project (LeIP) - Demographics & Access to Treatment 1

4 The reader is cautioned that many of the comparisons being drawn in subsequent Tables do so using both 2008 and 2012 data and so may not necessarily be relevant. However, the purpose of describing the relationships between the data is to illustrate the power behind the analysis of this information should more current data become available. a) Trends in Incidence and Mortality As shown in Table 2, between 2008 and 2012est. there was an increase in the incidence of lymphoma per 100,000 of population of 5.7% in Canada and of 3.3% in the U.S. Table 4 - Member Countries with Higher Rates of Incidence and Mortality* Table 2 - Lymphoma 2 Incidence Between 2008 and 2012est. there was a decrease in the lymphoma mortality rate per 100,000 population of 4.8% in the U.S. (See Table 3) No calculation could be made for Canada, due to the unavailability of data for Hodgkin lymphoma. Since incidence, population and mortality rates were unavailable for 2012 this information cannot be provided for LC s other member countries. Those countries with relatively low incidence and mortality rates tend not to have clinical trial websites for their own countries, the exceptions being Brazil and India. (See Table 5, below) Table 5 - Member Countries with Lower Rates of Incidence and Mortality* Table 3 - Lymphoma 3 Incidence Calculations do not include CLL as data was unavailable for both 2008 and 2012 for all countries 3 Calculations do not include CLL as data was unavailable for both 2008 and 2012 for all countries b) Clinical Trial Website Availability by Country According to our research to date, it appears that member countries with higher rates of incidence and mortality tend to have clinical trial websites for their own countries with the exception of Belgium, France, Sweden, Denmark, and Germany. (See Table 4) c) Standard of Care As shown in Table 6, in 2012 Canada, the U.S. and Germany have best practice standards of care as well as relatively high rankings for incidence as do 3 of the 6 countries with informational websites (Australia, France & Ireland). All 3 countries with standards of care in 2012 including Canada, U.S. and Germany have relatively higher 2008 mortality rates compared to other LC member countries, and according to Table 3, U.S. mortality rates have in fact dropped since Italy had the 3rd highest rate of incidence and the highest mortality rate in 2008, yet the standard of care for their country is categorized in 2012 as being incomplete. In 2008 the United Kingdom and Switzerland which had the 3rd and 4th highest rankings for mortality rates also appear to have incomplete information in 2012 for their countries standard of care available on the internet. 2 Lymphoma einformation Project (LeIP) - Demographics & Access to Treatment

5 Table 6 - Member Countries with Higher Rates of Incidence and Mortality* Table 8 - Rating on Availability of Information on Approval Status for Lymphoma Treatment for LC Member Countries As shown in Table 7, six of the seven countries with the lowest rankings for the incidence of lymphoma in 2008 including India, China, Brazil, Mexico, Barbados and Turkey have incomplete information for their countries standard of care in Despite this, Uruguay, which has the lowest incidence ranking, has an informational website about the standard of care for its own country. Table 7 - Countries with Lower Rates of Incidence and Mortality* The following analysis (Table 9) for treatment approvals includes only the 31 of LC s member countries for which either good or average information was available on the internet about the status of lymphoma treatment approvals. d) Lymphoma Treatment Approval During Phase I of LeIP, it was determined that 31 or 78% of LC s 40 member countries have good to average information about the approval status of lymphoma treatments available on the internet. This information was available for 79% of the 33 lymphoma treatments investigated for these countries. Argentina, Brazil, Venezuela, Croatia, Serbia, Turkey, Ukraine, Macedonia and Russia however have poor information available on the internet for lymphoma treatment approvals in that there was information available for only a maximum of 18% of the 33 lymphoma treatments being investigated. (See Table 8) In 2012, the 19 LC member countries with the highest rates of lymphoma treatment approvals have good information about treatment status available on the internet. (See Table 8) In 2012, these member countries also have health care systems with the exception of 7, including Bulgaria, Czech Republic, Hungary, Latvia, Lithuania, Poland and Slovakia. (See Table 9) In 2008 they had higher to average GDPs, with the exception of Bulgaria, which was among the 6 lowest for the 31 LC member countries in this analysis. Lymphoma einformation Project (LeIP) - Demographics & Access to Treatment 3

6 Table 9 - Countries with the Highest Rates for Lymphoma Treatment Approvals* Table 10 - Countries with the Lowest Rates for Lymphoma Treatment Approvals* Table 11 - GDP Ranking and Lymphoma Treatment Approvals for Smaller LC Member Countries* In 2012, the 10 countries with the lowest rates of approvals (Barbados, Singapore, Uruguay, Colombia, Japan, Mexico, India, New Zealand, Australia and China) have relatively less information about lymphoma treatment approvals available on the internet with the exception of Australia and New Zealand, which have good information available. (See Table 8) In 2008 Singapore, Australia, Japan and New Zealand were ranked in the top 17 of the 31 member countries in this analysis for GDP, all having healthcare systems in 2012 while the opposite for Barbados, Mexico, Uruguay, India, and Colombia was true. (See Table 10) In particular, Australia, Japan and New Zealand all have health care systems and among the highest 2008 GDPs amongst the 30 member countries in this analysis, but also rank amongst the highest 2008 lymphoma mortality rates of 5th, 7th and 8th, respectively. Most of LC s smaller member countries in terms of their population ranking in 2012 have higher rates of lymphoma treatment approvals in 2012 with the exception of Barbados, Singapore, Uruguay, New Zealand and Australia, all of which had higher GDP in 2008 with the exception of Uruguay and Barbados. (See Table 11). e) Lymphoma Death Rates When 2008 incidence rates for lymphoma are compared for the 7 member countries having the highest percentages of those dying from lymphoma of all cancers (2008), Japan has a significantly lower incidence rate compared to those other countries. (See Table 12) Table 12 - Highest Rates from Lymphoma Deaths of all Cancers 5 Includes NHL and Hodgkin only (statistics were unavailable for CLL) 4 Lymphoma einformation Project (LeIP) - Demographics & Access to Treatment

7 CONCLUSIONS Current, country specific information that would provide a demographic picture of lymphoma by subtype trends over time proved to be difficult to find during searches of secondary sources, and was either very limited or non-existent. The benefit of demographic information should it become available can be illustrated by the U.S. and Canada, the only countries providing recent information for which a trend analysis could occur. As shown in Table 3, despite the fact that the U.S. provides a standard of care website, it also has one of the highest mortality rates amongst LC member countries. However, a comparison to 2008 shows that their mortality rate has actually dropped by nearly 5% over that time. It is believed that should this type of demographic information become available for other LC countries by subtype, that it would be possible for lymphoma communities around the world to track the progression of lymphoma subtypes and the effectiveness of new therapies. Additionally, to switch the focus from tracking only by trial and therapy results to track by subtype, will allow for a better trend and success analysis as well as aiding in the development of new therapies for smaller subtypes through more global collaboration. Although comparisons were drawn in this report between the limited information found to be available for both 2008 and 2012 data which is not ideal, the main purpose was to illustrate the power behind analysis of this type of information in hopes that the information being proposed will become fully available for all lymphoma subtypes in the future. Consider for example the following conclusions drawn from this analysis: Although there was an increase in the incidence of lymphoma in the U.S. between 2008 and 2012est., mortality rates for that same period have fallen, but unfortunately, the same analysis could not be performed for any other LC member country, as current incidence, population and mortality rates are not available; In 2008 Belgium, France, Sweden, Denmark and Germany are the only LC member countries with higher incidence and mortality rates, and do not provide any clinical trial websites specific to their countries in 2012, this in contrast to the situation in Brazil and India for which the reverse is true; Although Italy, the United Kingdom and Switzerland had some of the highest rates of lymphoma incidence among member countries in 2008, in 2012 their country specific standard of care information, as described on their websites, were categorized as being incomplete ; This is in contrast to Canada, the U.S. and Germany, all of which had higher mortality and incidence rates, yet provide what could be classed as best practice standard of care websites; Countries with the lowest rankings for the incidence of lymphoma in 2008 including India, China, Brazil, Mexico, Barbados and Turkey are classified to have incomplete information for their countries standard of care websites in 2012; In 2012, 78% of LC s 40 member countries have good to average information about the approval status of 33 lymphoma treatments available on the internet whereas poor information is being provided in Turkey, Brazil, Croatia, Russia, Argentina, Venezuela, Serbia, Ukraine, and Macedonia; Most of LC s smaller member countries in terms of population have higher rates of lymphoma treatment approvals in 2012 with the exception of Barbados, Singapore, New Zealand and Australia; and Australia, Japan and New Zealand all have health care systems and among the highest GDPs yet rank amongst the highest for mortality rates and the lowest for drug approval rates amongst all LC member countries. RECOMMENDATIONS It is LC s position that the bi-annual gathering of demographic information by lymphoma subtype would provide lymphoma communities with better tracking, act as an enabler to benchmark long term trends around the world so as to plan for, and provide more leverage and to bring attention to and advocate for what is needed for further developments in subtype therapies. This report is a call for the lymphoma community to come together to ensure that a consistent, accurate and current flow of information be developed so all parties will be informed. It is recommended that all member countries are made aware of and have easy access to a resource that enables them to research both local clinical trials and standard of care as well as alternatives that might be available in their own language. LC will look into the feasibility of working alongside the healthcare community to determine the best means of ensuring access to a reliable, current resource for standard of care and diagnostic protocols. As well, LC will look into the feasibility of gathering subtype demographics and obtain funding in future phases of LeIP for this purpose. The W.H.O. s existing data base and information gathering process provides an opportune vehicle for the collection of this data. Lymphoma einformation Project (LeIP) - Demographics & Access to Treatment 5

8 Furthermore, it is recommended that LC review results of this report to develop an action plan to: Determine how best to ensure that members and their local communities have easy access to clinical trial and standard of care websites in a language they can understand; Determine how the term standard of care is being defined and used by local medical communities so that LC can advocate for a standardized terminology enabling members to understand the difference between the best available standard of care versus what is truly best practice standard of care and to provide effective education for any differences; and Continue to monitor the availability of treatment access taking into consideration economic conditions around the world, to ensure that all lymphoma patients regardless of their barriers to treatment are equally informed. REFERENCES 1. Lymphoma Coalition. Global Summary Chart. October 3, Lymphoma einformation Project (LeIP) - Demographics & Access to Treatment

9 DEMOGRAPHICS & ACCESS TO TREATMENT Worldwide Network of Lymphoma Patient Groups Contact us if you are a patient organisation that focuses on lymphoma, including CLL, or if you are interested in starting a patient organisation Southdown Road, #228 Mississauga, ON L5J 2Z1 karen@lymphomacoalition.org Phone: