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Joseph Barnard, Ph.D., Division of Pulmonary and Critical Care Medicine, Johns Hopkins University, responded with the following verbatim post in the COPD-Alert online forum. He subsequently identified himself as an acute lung injury researcher. His comments are followed by our response. Subject: RE: [COPD-ALERT] FAIR Foundation Susan, please don't give a forum to that foundation. It is a terrible distortion, the way that they are trying to divide people on research funding. The NIH has taken a disease with the potential of killing humanity, and may yet do so, and may have already done so in much of Africa, and provided a stopgap that will allow patients to at least survive for a longer period. The spending on AIDS is far more important in my opinion than the spending on COPD, I am sorry to say, as a researcher hopefully in line for some of that funding. The average lifespan with AIDS before the newer drugs were developed was about 18 months, and now more like 20 years. But 20 years is a far cry from the normal lifespan nonetheless. And until there is a cure, we are faced with some prospects of going back to the lifespans for our population from the 17th century. The funding worked. But we still need to fix the disease, and until they do we need to continue topay out the bucks for it. At least with AIDS, they knew pretty quickly what the pathogen was, and could direct their research toward it directly. Unfortunately, with COPD, we know for most patients that smoking for 30yrs was the direct cause, but we cannot turn back time. For those with alpha-1 antitrypsin deficiency, the replacement therapy does some good, and detection and stopping smoking is quite helpful in slowing the progression of the disease. More funding would help, but it is so unbelievably deceptive to talk about funding per patient that I cannot even talk about it. http://www.wrongdiagnosis.com/c/copd/prevalence.htm Think about this: the prevalence of COPD is 13.5 million patients according to the NIH. Now, at $5000/ patient you are suggesting we should spend 67.5 billion dollars per year on COPD research. While that would fund the pulmonary research community quite well, and everyone in pulmonary research would be working on COPD, where would the money come from? And if we spend this money on COPD, putting me on easy street, what about the treatments for diabetes? and AIDS? (sorry, I forgot that this group thinks we should not spend any more on that, it's already gotten its money) And in terms of diseases increased by smoking, what about lung cancer? what about throat cancer? kidney cancer? Oh, yeah, what about all the heart disease and peripheral vascular disease? Smoking accounts for about half of that, I think. The sense that I have is that funding should be allocated based on the quality of the research proposals and the results of previous research proposals. If someone suggests we should fund research into the effect of green tea on emphysema progression, I want to see some pretty good information from pilot studies that it affects the things we know to beinvolved in COPD's progression. I don't want to have so much funding in this area that suddenly we are smothered by the crummy sort of research that can be done, and miss the important results because of the background noise. I also don't want you to think that we are satisfied with the currentl level of funding. There isn't enough money to go around, and politics aside, until we can fund better stem cell research we aren't going to produce cures for anything that requires rebuilding of tissue, like diabetes and emphysema, and cystic fibrosis, and hear attacks and strokes. The government cannot just print up extra money to produce the level of funding we all would like to see, (despite their assurances that they can for things like wars). If you want more money for chronic lung disease research, you will have to push your congressmen to enact legislation for dedicated NIH funding for that area. That is how every disease has acquired its own legislated increase in funding; for example, there are certain areas of research into diabetes that are legislatively required to be funded. Because of that, the pay line is better in those areas. In other words, a larger percentage of the grants submitted get funded. To put this another way, the NIH itself fairly spreads the money around to all areas of interest, while the congress puts rules in place to specifically target certain disease conditions for extra funding. As a result, money for those diseases is somewhat easier to get. In general, that money is usually allocated to the big diseases, like diabetes, heart disease, cancer, etc. The COPD advocacy community has not done as good a job as those diseases have done in pursuing and acquiring that sort of funding. DOn't put your support into FAIR, a hugely unfair and shortsighted group. I daresay they are also targeting diabetes, heart disease, asthma, etc, and not just COPD. If we follow their apparent priorities, we will have meaningfully research only into the diseases with the largest number of patients. And these diseases are to a large degree preventable today. Ifpeople don't start smoking, COPD will no longer be the 4th leading cause of death (in 30-40 years). Oh yeah, a large number of cancers of various types can be ascribed to smoking. Oh, yeah, at least half of heart disease and cardiovascular disease, and strokes, would disappear if people didn't smoke. If people lose 20 pounds or walk 15 minutes per day, there won't be this epidemic of type 2 diabetes that is causing so much of the remaining cardiovascular disease and kidney failures. If people didn't drink more than a moderate amount, liver disease would dramatically drop. If people didn't sleep around, cervical cancer would go away. So would all those sexually transmitted diseases, and some of the hepatitis C problems. If people took flu shots, and other vaccinations, a lot of the communicatable diseases would plummet into nothingness. So, if people did stop these things, (and I didn't mention drug abuse, because it is not nearly as big a problem, but iv drug abuse causes hepatitis C, and AIDS, and other issues including crime) then the modern healthcare crisis would go away. Furthermore, the research money oculd be better targeted at the things like AIDS that are a crisis. There is NOresearch into hemorrhagic fevers (i.e., EBOLA). There are hardly any research grants on smoke and fire induced lung injury. Now that would be a FAIR way to allocate research funding. Joe Joseph Barnard, Ph.D. Response by FAIR Foundation President & CEO Dear Fellow COPD-Alert Members, (the blue underlined segments are linked to corroborating facts) As President and CEO of The FAIR Foundation, I travel throughout America giving speeches and educating on the need for change in the manner in which our government (National Institutes of Health or NIH) allocates research funding to insure that all diseases receive an amount of funding that is fair and equitable. For example, I point out that $5 is being spent on each COPD patient in research versus $3,084 on each AIDS patient. We feel that this differential is unfair. AIDS activists holler at me during speeches and angry emails are sent to me. I normally don’t respond to the typed attacks, but Joseph Barnard’s posting in our group requires a response since it is public and nothing he said is factual. Barnard disparages The FAIR Foundation's Officers, thousands of supporters and 27-member Board of Directors, consisting of eminent physicians and disease advocates, as “hugely unfair and shortsighted.” We are very proud of every FAIR Foundation members (now in 47 states and the District of Columbia) and we firmly believe the following fact is what is “hugely unfair”: the increase in AIDS funding since 1999 – just the increase alone – is greater than the entire 2005 disease research budget for EVERY other disease except cancer and cardiovascular disease. As to the manner in which we believe research funds should be distributed, which were incorrectly reported by Barnard, our allocation factors (http://fairfoundation.org/factors.htm) are exactly the same as what is now used by the NIH except for two differences: 1) we believe a disease’s mortality rate should be given emphasis. This would result in much greater funding for COPD and much less funding for AIDS. 2) We believe the degree to which a disease is heavily responsible for deaths, but is frequently not reported on the death certificate should also be a factor. This would benefit both COPD and AIDS. The allocation factors that both the NIH and we endorse insure diseases that do not kill many, but that cause great suffering, will also receive increased funding. Under The FAIR Foundation system of funding, NIH allocations for all diseases except AIDS will increase. AIDS activists like Barnard typically state that AIDS is a disease “with the potential of killing humanity, and may yet do so, and may have already done so in much of Africa.” They do this to frighten everyone and protect their present disproportionately exorbitant funding. Indeed, at the present rate of funding for all AIDS programs, the total monies spent on AIDS will approach 1/5th of a Trillion dollars in two years. The true facts regarding Global AIDS are that the infection rate of AIDS in every country, as reported by UNAIDS and the World Health Organization, is less than one percent except in Sub-Saharan Africa and the Caribbean (Links one and two). What do the people in Sub-Saharan Africa and the Caribbean need? More research by Barnard and other AIDS “Research Associates”? No, they need the same things that have dropped the AIDS death rate in California’s newly infected patients 97% and that have dropped the death rate in all of the USA for all AIDS patients over 80%: namely, prevention education, the drugs that have already been developed and that are so successful (HAART or Highly Active Anti-retroviral Therapy), and harm reduction policies. The FAIR Foundation has been calling for these global policies and we were heartened to hear Anthony Fauci, Director of the NIH’s NIAID state that the answer to the AIDS global infections is prevention expenditures (on CNBC). (NIAID = National Institute of Allergy and Infectious Diseases and it oversees AIDS funding at the NIH) Furthermore, note the following: a) in a stunning article from the Boston Globe, reporter John Donnelly reports worldwide AIDS infections are now thought to be overestimated by as much as 50%, and b) a recent Centers for Disease Control Study In Kenya, as reported by the Daily Telegraph’s Adrian Blomfield, has shown that proper testing has resulted in the finding that millions of Africans previously thought to have AIDS are free of the disease. Barnard’s monetary bias is clear. After outlining policies we are not familiar with, he states that he is afraid of those policies “putting me on easy street” and that he is “a researcher hopefully in line for some of that funding.” Barnard castigates those with COPD, cardiovascular disease, diabetes (type 2), cancers, liver disease, flu, communicatable (his spelling, not ours) diseases and cervical cancer because their own behavior caused these illnesses. He states, “these diseases are to a large degree preventable today.’ We are The FAIR Foundation do not believe the preventable nature of a disease should be a factor in NIH funding decisions. The NIH clearly agrees with us because they don’t use it as an allocation factor either. Having said that, it cannot go unnoticed that Barnard conveniently and hypocritically omits HIV/AIDS from his list, yet in a mean-spirited statement against women, beyond the limits of decency, he states “If people didn't sleep around, cervical cancer would go away.” We DO agree with Barnard on one issue. He states, “The government cannot just print up extra money to produce the level of funding we all would like to see.” Indeed, we all have to live within a budget and so does the NIH. If you and I spend too much money on one expense in our daily living and cannot pay our mortgages, we must reallocate money. The same is true with the NIH. With AIDS deaths having plummeted dramatically, it is now time to redistribute some research funds away from AIDS to more deserving diseases, like COPD and many others. We at The FAIR Foundation appreciate the great support of our COPD national members. Indeed, it has not been uncommon for twenty COPDers to join our organization on some days and we are thrilled to have you as members. Please do not let the irrational statements by AIDS activists intimidate you or keep you from FAIR activism in encouraging others to join in our efforts for Fair Allocations In Research. Richard Darling, DDS
Richard
Darling, DDS:
2003 National Public Citizen of the Year
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COPD = Chronic Obstructive Pulmonary Disease |
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