An Open Letter and Invitation to Wisconsin Health Care Advocacy Organizations
Revised April 28, 2009
As a senior citizen of the State of Wisconsin whose family is suffering from three serious cell-based diseases and who has been working for both private and public funding for stem cell research, I am writing to your organization for support.
As a key health care stakeholder and advocacy organization I believe that your group can play a critical advocacy role at this early stage in Wisconsin’s stem cell research initiative. As an effective health advocate organization you know that every effort must be made to ensure that all Wisconsin citizens have equal and fair access to affordable cell-based medications and other health therapies.
Many organizations like your own have been fighting long and hard for your patients so that they will have more reasonably priced drugs and other treatments. Many of you already support federal health insurance programs and favor more universal health care for all of our citizens. Unfortunately there is still no assurance that this goal will be realized soon.
While we must continue to deal as quickly and directly as possible with the immediate health care crises, we must also look beyond the present health care crisis and take action now to make future stem cell drugs and therapies more affordable to all Wisconsin citizens. To do so citizen membership groups like yours need to support a more lasting and equitable solution to our nation’s health care problems.
Stem cell research is still in a nascent state and suffering from moral controversy and consequent funding delays. It’s fair to say that in many respects Wisconsin has been treading water while California and many eastern states that publicly fund this research continue to advance.
Although state surveys have consistently shown that 75 to 80 percent of Wisconsin citizens support stem cell research our state legislature offers no direct funding or policy platform that would ensure that you and I and all taxpayers will receive any tangible public health care benefit whatsoever from any Wisconsin stem cell research discoveries.
To date we have been promised only indirect trickle-down economic effects, including more jobs and a higher corporate tax base from our support. While this is a worthy and much needed economic benefit, it alone is far too narrow and short-sighted. If Wisconsin is to effectively manage its ever escalating and exorbitant health care costs we must act NOW. If we have the will, we will end the disenfranchisement of our most vulnerable and needy citizens of their basic human right to high quality and affordable health care.
A genuine public health care benefit in Wisconsin for the funding of stem cell research can be derived from legislating a fair portion of patent licensing fees and/or a percent of patent royalties be returned to the funding source, namely the State of Wisconsin.
In addition to the above, a broad community discussion on Wisconsin stem cell research should include the following:
Does your organization planning time line presently extend to the day when medical research does more than simply help mitigate the health conditions of your service clients or member group and literally begins to cure the disease?
Can your organization envision a not too distant time when your service members will suddenly ask, “Why didn’t you inform us that our illness might someday be cured through miracle-like stem cell-based medications and therapies?” And, “What actions did your organization take to ensure that my cell-based medical needs and health care rights were protected during the early developmental phase of this research.”
If there is indeed a possibility --- and the scientific community now believes there clearly is --- of a cure or any reason to hope for a cure through cell-based research and development, is it not now ethically and morally incumbent upon your organization to begin to educate itself about such miracle-like research and begin now to formally advocate and educate your membership about its revolutionary and healing potential?
After all, wasn’t it in Madison, WI, long before there was any scientific consensus about the etiology of mental illness, that which is now called NAMI, pioneered what it believed was the genetic and neurological cell-based origin of this disease? From that point on the blaming of the patient and/or her family for this disease stopped. Now is again a similar moment in Wisconsin’s mental health history, when millions of chronically ill persons, like my son and my family are left without hope of ever being cured.
Does your present mission or long term strategic goal call for more than a disease mitigation, adjustment and maintenance model of health care or does it include the goal of total elimination of that particular disorder or disease? If not, why not? In order to protect your organization’s credibility should not an end point at least be envisioned?
To prepare for this not too distant future perhaps the first step would be to establish a goal of becoming a more informed organization consumer of stem cell research, and its potential application to your member or client needs.
Will Wisconsin stem cell discoveries be made available to the public at reasonable prices and in sufficient quantities to all Wisconsin citizens? Will special considerations including discounts be given to low and medium income patients and other underserved groups?
Are policies needed to ensure that state supported stem cell scientists and biotech companies will pursue research and development into prioritized disease groups such as cancer, heart, diabetes, Alzheimer’s and Huntington’s versus pursuing stem cell products that have more immediate commercial potential for large markets? Or will Wisconsin citizens spend tax dollars to pay for cosmetic and other personal enhancing products for the rich and powerful while seniors and others struggle to pay for their most basic health care needs?
Has your organization considered the possible relationship between how bio-medical research is now being funded in Wisconsin and the exorbitantly high prices Wisconsin taxpayers must now pay for their medicines and therapies? Has your board’s policy planning council or elected representatives ever had a discussion regarding these three questions?
Who should determine whether a government funded invention should be patented? Who should determine in what manner patents should be licensed? And, who should profit from patent licenses and in what amounts? Should we not be encouraging open stakeholder discussion to identify and evaluate alternative intellectual property business models?
For a state that has now become known as the epicenter of stem cell research and who holds three broad embryonic stem cell patents, this is more than an intellectual property issue but a pivotal human rights issue when health care affordability and public budget expenditures are being weighed.
Will eventual stem cell clinical trials include a diverse population sample? Will these trials adversely discriminate against the interests of your constituency or membership?
Are policies needed to ensure that companies who use state funding direct their research into the widest ranges of illnesses, not just research for the most well-heeled disease advocates?
State innovation grants, tax credits and hosts of other public financial incentives have already been awarded or are now in the state’s administrative pipeline. This money is being spent without any health care policy safeguards or payback conditions whatever. Someone has said, “Asking grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the henhouse.”
If these stem cell policy issues are not currently on your organization’s radar screen, and do not now appear on your strategic planning priorities list, this neglect could be catastrophic for your membership down the road.
I am asking your board of directors to read this letter and weigh its importance to the members they serve. The biggest mistake you or your organization could make is to simply do nothing.
I urge you to ask your board and your membership to consider this basic question. Do you believe that Wisconsin citizens should publicly fund stem cell research and receive a public health care benefit from cell-based drugs and therapies?
If the answer is yes, then, would your organization support the following policy initiative: (This organization) supports legislation for federal and state funding of stem cell research, along with public health care safeguards, with benefit affordable to everyone.”
Furthermore, I ask your organization to consider joining a Wisconsin coalition to support state and federal funding for stem cell research along with policies to ensure all Wisconsin citizens have affordable access to cell-based medicines and therapies.
For more information on state funding of stem cell research in Wisconsin, see my published articles here on my blog and on the Wisconsin Stem Cell Now, Inc., website. My email address is: bergentown@sbcglobal.net.
Respectfully yours,
William R. Benedict
Tuesday, April 28, 2009
Tuesday, April 7, 2009
Science Without Ideology: The Future of Stem Cell Research
UW-Madison Retirement Association’s Challenges Committee
Question for Dr. R. Alta Charo -
My name is William R. Benedict. I am a retired social worker. My family suffers daily with chronic cell-based diseases. As a family advocate, for the past five years I have been advocating for federal and state funding for embryonic stem cell research (ESCR). With serious chronic diseases, my family and our grand children will very likely stand to benefit enormously from miracle cell-based therapies.
My family and I want to thank you for all you have done to help Wisconsin’s stem cell program succeed so well to this point. My family and I are indebted to you for your tireless work and support for this research. Thanks so much for taking the time to be with us this afternoon and for speaking to us about the most critical issues now facing this research.
With respect to the question of how can emerging stem cell therapies be affordable to patients or in a new national health care system, I believe I speak today for tens of millions of families with serious chronic diseases, who are of modest means and who without serious stem cell research reform will be deprived of the fruits of this research.
My question concerns the nature of this “new attitude” that is referred to along with the coming of the new Obama Administration. To what extent will this new attitude look like what we had before the George W. Bush administration?
Will science and the pharma business continue to do “business as usual” as it relates to existing intellectual property laws that result in the already exorbitantly rich pharmaceutical corporations getting richer and richer at the expense of the taxpayers and health consumers?
As a preeminent bio-ethicist, and as regarding the common interests of all, who should determine whether a government funded invention should be patented? And who should decide what manner such patents should be licensed? And finally who should profit from patent licenses and in what amounts.
Presently as you know by existing statute it’s the scientist alone and the so-called non-profit research office transfer officials who are handmaidens to the drug industry, who benefit most. While this is an issue too large to address this afternoon
would you begin this discussion today by commenting on what stem cell research issues should be left to the scientists and what issues should be addressed through the democratic process?
Question for Dr. R. Alta Charo -
My name is William R. Benedict. I am a retired social worker. My family suffers daily with chronic cell-based diseases. As a family advocate, for the past five years I have been advocating for federal and state funding for embryonic stem cell research (ESCR). With serious chronic diseases, my family and our grand children will very likely stand to benefit enormously from miracle cell-based therapies.
My family and I want to thank you for all you have done to help Wisconsin’s stem cell program succeed so well to this point. My family and I are indebted to you for your tireless work and support for this research. Thanks so much for taking the time to be with us this afternoon and for speaking to us about the most critical issues now facing this research.
With respect to the question of how can emerging stem cell therapies be affordable to patients or in a new national health care system, I believe I speak today for tens of millions of families with serious chronic diseases, who are of modest means and who without serious stem cell research reform will be deprived of the fruits of this research.
My question concerns the nature of this “new attitude” that is referred to along with the coming of the new Obama Administration. To what extent will this new attitude look like what we had before the George W. Bush administration?
Will science and the pharma business continue to do “business as usual” as it relates to existing intellectual property laws that result in the already exorbitantly rich pharmaceutical corporations getting richer and richer at the expense of the taxpayers and health consumers?
As a preeminent bio-ethicist, and as regarding the common interests of all, who should determine whether a government funded invention should be patented? And who should decide what manner such patents should be licensed? And finally who should profit from patent licenses and in what amounts.
Presently as you know by existing statute it’s the scientist alone and the so-called non-profit research office transfer officials who are handmaidens to the drug industry, who benefit most. While this is an issue too large to address this afternoon
would you begin this discussion today by commenting on what stem cell research issues should be left to the scientists and what issues should be addressed through the democratic process?
Friday, April 3, 2009
State Funding of Stem Cell Research: A public health care benefit for all Wisconsin Citizen
Public Testimony: Joint Finance Committee/Biennium Budget
Cambridge, WI
By now we know that solving Wisconsin’s ever-growing health care costs is a multifaceted problem and will not be solved by any single solution. And while there are many comprehensive solutions being proposed, none of them go directly to the core issue---monolithic and predatory health care pharmaceutical pricing practices.
In 2005 my partner and I were vacationing in San Diego California. While reading the San Diego Tribune I just happened to read about California’s 3 billion dollar stem cell research program and about the many health care stakeholder groups who all were fighting for something they were calling a “public benefit.”
I continued to read and soon learned what they meant by the words, “public benefit.” They wanted to make sure that medical breakthroughs and medicines developed through stem cell research, and funded by their tax dollars, would be available and affordable to every citizen in California. Subsequently through referendum their State constitution along with revised intellectual property rights, now provide such health care safeguards for their tax payers and health consumers.
Wisconsin’s legislature should stop dragging its feet, step up to the plate, and do the right-thing for Wisconsin taxpayers and its health consumers.
This means that the state legislature should follow the lead of our great President, Barack Obama, and pass funding legislation NOW along with a policy platform that protects both its gold standard stem cell investment and its health consumers from outrageous and exorbitant cell-based drug prices down the road. NOW, not later, is the time to act.
When we weigh the billions and billions of dollars to be both made and saved through miracle cell-based cures of our worse most debilitating diseases and by such life enhancements as restored memory, increased mobility, regenerated body parts, and most of all, increased longevity, only then can we begin to appreciate the real scope and importance of the health care policy challenge that lies before you and begs for your attention.
Californians have learned their lessons well from our nation’s health care problems and have decided to go directly to the root of our health care pricing crisis. They are no longer going to pay twice for their health care: Once for the research and once again for the exorbitantly priced medications and therapies.
Public health care benefit safeguards can mean anything from requiring a successful grantee to return some fixed percentage of their profit back on their state funded billion-dollar stem cell-based drug discovery to the state’s designated patient health care fund to simply setting pricing thresholds on state health insurance costs for state funded cell-based medications.
The bottom line is that you and I as Wisconsin lawmakers and citizens can prove to ourselves and our grandchildren, and future generations, that we have learned our lesson from exorbitant health care pricing. We have learned not to give our money to people without first asking who they are, why they need it, and how they plan on using it. This new policy of asking the public-funded grantee to meet certain expectations and provide some return on our investment is better than writing a blank check and continuing with health care in Wisconsin as we now know it.
Now is the time for Wisconsin policy makers to decide whether the miracle cures promised will be made accessible and affordable to Wisconsin families with cell-based diseases.
Ultimately the answer to this question must be reflected in the language of the state’s financial and tax research innovation incentives and the stimulus funds now being proposed.
Asking the grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.
Without prompt action now by our Wisconsin state legislature Wisconsin citizens should not expect that cell-based therapies and drugs derived from this research will eventually benefit all of us as health consumers and taxpayers.
Cambridge, WI
By now we know that solving Wisconsin’s ever-growing health care costs is a multifaceted problem and will not be solved by any single solution. And while there are many comprehensive solutions being proposed, none of them go directly to the core issue---monolithic and predatory health care pharmaceutical pricing practices.
In 2005 my partner and I were vacationing in San Diego California. While reading the San Diego Tribune I just happened to read about California’s 3 billion dollar stem cell research program and about the many health care stakeholder groups who all were fighting for something they were calling a “public benefit.”
I continued to read and soon learned what they meant by the words, “public benefit.” They wanted to make sure that medical breakthroughs and medicines developed through stem cell research, and funded by their tax dollars, would be available and affordable to every citizen in California. Subsequently through referendum their State constitution along with revised intellectual property rights, now provide such health care safeguards for their tax payers and health consumers.
Wisconsin’s legislature should stop dragging its feet, step up to the plate, and do the right-thing for Wisconsin taxpayers and its health consumers.
This means that the state legislature should follow the lead of our great President, Barack Obama, and pass funding legislation NOW along with a policy platform that protects both its gold standard stem cell investment and its health consumers from outrageous and exorbitant cell-based drug prices down the road. NOW, not later, is the time to act.
When we weigh the billions and billions of dollars to be both made and saved through miracle cell-based cures of our worse most debilitating diseases and by such life enhancements as restored memory, increased mobility, regenerated body parts, and most of all, increased longevity, only then can we begin to appreciate the real scope and importance of the health care policy challenge that lies before you and begs for your attention.
Californians have learned their lessons well from our nation’s health care problems and have decided to go directly to the root of our health care pricing crisis. They are no longer going to pay twice for their health care: Once for the research and once again for the exorbitantly priced medications and therapies.
Public health care benefit safeguards can mean anything from requiring a successful grantee to return some fixed percentage of their profit back on their state funded billion-dollar stem cell-based drug discovery to the state’s designated patient health care fund to simply setting pricing thresholds on state health insurance costs for state funded cell-based medications.
The bottom line is that you and I as Wisconsin lawmakers and citizens can prove to ourselves and our grandchildren, and future generations, that we have learned our lesson from exorbitant health care pricing. We have learned not to give our money to people without first asking who they are, why they need it, and how they plan on using it. This new policy of asking the public-funded grantee to meet certain expectations and provide some return on our investment is better than writing a blank check and continuing with health care in Wisconsin as we now know it.
Now is the time for Wisconsin policy makers to decide whether the miracle cures promised will be made accessible and affordable to Wisconsin families with cell-based diseases.
Ultimately the answer to this question must be reflected in the language of the state’s financial and tax research innovation incentives and the stimulus funds now being proposed.
Asking the grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.
Without prompt action now by our Wisconsin state legislature Wisconsin citizens should not expect that cell-based therapies and drugs derived from this research will eventually benefit all of us as health consumers and taxpayers.
Public Testimony
As a family with several cell-based diseases and a taxpayer concerned about Wisconsin economic future I am dumb-founded as to why this legislature continues to ignore this state’s multi-billion dollar gold standard resource. With each passing day, without state funding and a sound 21st century policy foundation in place, down the road, both Wisconsin taxpayers and health consumers will wonder just how in the world did their state lawmakers fail to act to protect and conserve this state’s greatest scientific and technological resource ever?
More specifically why does our state legislature sit idly by while a small non-public non-profit entity usurps its authority and decision-making power over this state’s most valuable twenty-first century economic property and resource?
How much longer will it take before Wisconsin lawmakers make the connection between its present health care and economic crisis and how its lucrative multi-billion dollar stem cell legacy is presently being shepherded? In all due respect to Dr. James Thomson who I greatly admire and respect, fundamentally this is a State of Wisconsin creation!
How many Wisconsin legislators have any idea about the nature of the decision-making and intellectual property language that was involved in Wisconsin’s decision to grant to our chief competitor, a large biotech company in the State of California, an exclusive embryonic stem cell license? Such agreed upon or passive impotence will not and should not go unnoticed by Wisconsin taxpayers.
California taxpayers and lawmakers have wisely determined that such lucrative intellectual property rights and profits should be shared with the California taxpayer and no longer controlled totally by the inventor alone and/or a small unelected elite in a research transfer office.
Finally I refer you to California’s Constitution on this subject, and more recently the Stem Cell Affordability Legislation (SB 343) now before California’s Senate Health Care Committee.
Most respectfully,
William R. Benedict
More specifically why does our state legislature sit idly by while a small non-public non-profit entity usurps its authority and decision-making power over this state’s most valuable twenty-first century economic property and resource?
How much longer will it take before Wisconsin lawmakers make the connection between its present health care and economic crisis and how its lucrative multi-billion dollar stem cell legacy is presently being shepherded? In all due respect to Dr. James Thomson who I greatly admire and respect, fundamentally this is a State of Wisconsin creation!
How many Wisconsin legislators have any idea about the nature of the decision-making and intellectual property language that was involved in Wisconsin’s decision to grant to our chief competitor, a large biotech company in the State of California, an exclusive embryonic stem cell license? Such agreed upon or passive impotence will not and should not go unnoticed by Wisconsin taxpayers.
California taxpayers and lawmakers have wisely determined that such lucrative intellectual property rights and profits should be shared with the California taxpayer and no longer controlled totally by the inventor alone and/or a small unelected elite in a research transfer office.
Finally I refer you to California’s Constitution on this subject, and more recently the Stem Cell Affordability Legislation (SB 343) now before California’s Senate Health Care Committee.
Most respectfully,
William R. Benedict
Thursday, April 2, 2009
Decline in state’s mental health programs unconscionable
The Capital Times
As the father of a son with serious mental illness, I was saddened to see how my state’s mental health program scored in a recent national study. It received a fair-to-poor grade, a score of C.
In 2006 our state had received a B and since no state had earned an A, this performance went largely unnoticed, in part because Wisconsin is the birthplace of a pre-eminent national mental health advocacy organization ---the National Alliance on Mental Illness. NAMI has led the nation both in mental health advocacy and in the creation of the most innovative and effective community-based service program model in the nation.
In 2006 NAMI National conducted and published its first Grading the States Report: “Grading the States 2006: A Report on America’s Health Care System for Serious Mental Illness. Recently NAMI released its Grade the States 2009 report. In it they used the 2006 findings for baseline comparisons. This report measures each state’s progress ---or lack of progress in many cases ---in providing evidence-based, cost-effective recovery- oriented services for children and adults living with serious mental illness.
In NAMI’s 2006 progress report the nation’s grade was D and Wisconsin scored a B. In this more recently released report the nation again scored a D while Wisconsin’s grade slipped downward from a B to C. Wisconsin was one of twelve states who fell back while 23 states stayed the same. Wisconsin has over 188,000 residents with serious mental illness.
Measures evaluated by NAMI had to do with the extent that the state mental health program had a workforce development plan, state mental health insurance parity laws and mental health coverage in programs for the uninsured. Other significant measures included the state’s ability to provide accurate data on a variety of services, including evidenced-based practices, service outcomes, and demographic data. Such measures undergird NAMI’s fundamental assertion that public funding for mental health treatment services must be tied to outcome performance measures.
Financing and core service measures also included Wisconsin’s 79 Community Support Programs (CSPs). These programs were found to fall far short of national fidelity standards. Funded in part by state Medicaid funds but heavily dependent on local county tax dollars, CBS produces a wide range of service quality and performance outcomes throughout the state.
The Division of Mental Health and Substance Abuse Services (DMHSAS) is the state mental health agency that works directly with county mental health agencies. While DMHSAS 2008 -09 program plans were found to be well intended, they failed to address these critical deficiencies.
Ironically, this conclusion was also supported in an August 2007 Wisconsin Council on Mental Health letter. Members of the council expressed concern “about the bluntness and ineffectiveness of the DMHSAS State Plan indicators as measures of state progress toward meeting important mental health goals and objectives.”
This state planning and review public watchdog agency also expressed its “concern about the quality and sources of data collected.” Its concern was particularly acute with respect to reports of services by counties who were delegated much of the responsibility for the plan’s implementation.
Let me quote the council: “Both the DMHSAS indicators and Department of Human and Family Services data are critical for the State and council to identify and support appropriate funding recommendations and decisions. Our recommendations are unfortunately undercut by inadequacies in both.“
So what has caused Wisconsin’s once innovative and dynamic mental health program to sink into mediocrity? This report suggests limited access and availability of services; insufficient funding; inequities of the state’s decentralized funding system and a still- broken information system that cripples the state’s ability to effectively plan, evaluate and account for its spending and service-delivery decisions.
If this isn’t a call to action what is? Won’t you join with NAMI and with our mentally ill sister and brothers and their families and as concerned taxpayers simply say, “We are not going to take this anymore!”
As the father of a son with serious mental illness, I was saddened to see how my state’s mental health program scored in a recent national study. It received a fair-to-poor grade, a score of C.
In 2006 our state had received a B and since no state had earned an A, this performance went largely unnoticed, in part because Wisconsin is the birthplace of a pre-eminent national mental health advocacy organization ---the National Alliance on Mental Illness. NAMI has led the nation both in mental health advocacy and in the creation of the most innovative and effective community-based service program model in the nation.
In 2006 NAMI National conducted and published its first Grading the States Report: “Grading the States 2006: A Report on America’s Health Care System for Serious Mental Illness. Recently NAMI released its Grade the States 2009 report. In it they used the 2006 findings for baseline comparisons. This report measures each state’s progress ---or lack of progress in many cases ---in providing evidence-based, cost-effective recovery- oriented services for children and adults living with serious mental illness.
In NAMI’s 2006 progress report the nation’s grade was D and Wisconsin scored a B. In this more recently released report the nation again scored a D while Wisconsin’s grade slipped downward from a B to C. Wisconsin was one of twelve states who fell back while 23 states stayed the same. Wisconsin has over 188,000 residents with serious mental illness.
Measures evaluated by NAMI had to do with the extent that the state mental health program had a workforce development plan, state mental health insurance parity laws and mental health coverage in programs for the uninsured. Other significant measures included the state’s ability to provide accurate data on a variety of services, including evidenced-based practices, service outcomes, and demographic data. Such measures undergird NAMI’s fundamental assertion that public funding for mental health treatment services must be tied to outcome performance measures.
Financing and core service measures also included Wisconsin’s 79 Community Support Programs (CSPs). These programs were found to fall far short of national fidelity standards. Funded in part by state Medicaid funds but heavily dependent on local county tax dollars, CBS produces a wide range of service quality and performance outcomes throughout the state.
The Division of Mental Health and Substance Abuse Services (DMHSAS) is the state mental health agency that works directly with county mental health agencies. While DMHSAS 2008 -09 program plans were found to be well intended, they failed to address these critical deficiencies.
Ironically, this conclusion was also supported in an August 2007 Wisconsin Council on Mental Health letter. Members of the council expressed concern “about the bluntness and ineffectiveness of the DMHSAS State Plan indicators as measures of state progress toward meeting important mental health goals and objectives.”
This state planning and review public watchdog agency also expressed its “concern about the quality and sources of data collected.” Its concern was particularly acute with respect to reports of services by counties who were delegated much of the responsibility for the plan’s implementation.
Let me quote the council: “Both the DMHSAS indicators and Department of Human and Family Services data are critical for the State and council to identify and support appropriate funding recommendations and decisions. Our recommendations are unfortunately undercut by inadequacies in both.“
So what has caused Wisconsin’s once innovative and dynamic mental health program to sink into mediocrity? This report suggests limited access and availability of services; insufficient funding; inequities of the state’s decentralized funding system and a still- broken information system that cripples the state’s ability to effectively plan, evaluate and account for its spending and service-delivery decisions.
If this isn’t a call to action what is? Won’t you join with NAMI and with our mentally ill sister and brothers and their families and as concerned taxpayers simply say, “We are not going to take this anymore!”
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