Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hey Tricia When I first got sick, stomach problems were my BIG problem and I was prescribed 25 mg amitriptyline, which is an antidepressant. It would be 75 mg plus if prescribed for depression. It helped a little and made sure I slept well! The doc wanted to 'up' the dose but when I tried, I went into urine retention, so had to drop back down straight away. I still have stomach problems, but no where near as bad as 18 months ago. I only take the amitrip. occasionally to sleep. Hope you feel OK today. Love C 2 (UK) On 19 Feb 2004, at 15:56, TLC wrote: > > > One of my close friends has mild RA, she has had many stomach problems > from > her meds...as I know some of us did and some still do. Her doctor > prescribed > Prozac for her a couple of weeks ago. She did need something for > stress.... > but here's the " kicker. " Her stomach is all better and her doc told > her that we > have some of the same chemicals in our stomach as we do in our brain, > and that > the Prozac is helping her stomach. He said that an antidepressant can > do that. > For myself, I have had a very sensitive stomach for years, ever since > I had gotten > a bleeding ulcer from Relafen. I have been taking Lexipro > (antidepressant and > antianxiety med) for a couple of months now, and I have noticed that > my stomach > seems much better...such as..I can have a cup of coffee without > heartburn or my > stomach giving me grief....same thing with other foods that used to > bother..now > they don't. > > What do the rest of you think about this? I plan to ask my rhuemy when > I see him > in a couple of months. > > Thanking you now for comments... > > Wisconsin, > Tricia > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > The materials and information contained in this message are not > intended to replace the services of a trained health professional or > to be a substitute for medical advice of physicians and/or other > health care professionals. The International Still's Disease > Foundation is not engaged in rendering medical or professional medical > services. You should consult your physician on specific medical > questions, particularly in matters requiring diagnosis or medical > attention. The International Still's Disease Foundation makes no > representations or warranties with respect to any treatment, action, > application, medication or preparation by any person following the > information offered or provided within this support form. > > ion by any person following the information offered or provided > within this support form. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hey Tricia When I first got sick, stomach problems were my BIG problem and I was prescribed 25 mg amitriptyline, which is an antidepressant. It would be 75 mg plus if prescribed for depression. It helped a little and made sure I slept well! The doc wanted to 'up' the dose but when I tried, I went into urine retention, so had to drop back down straight away. I still have stomach problems, but no where near as bad as 18 months ago. I only take the amitrip. occasionally to sleep. Hope you feel OK today. Love C 2 (UK) On 19 Feb 2004, at 15:56, TLC wrote: > > > One of my close friends has mild RA, she has had many stomach problems > from > her meds...as I know some of us did and some still do. Her doctor > prescribed > Prozac for her a couple of weeks ago. She did need something for > stress.... > but here's the " kicker. " Her stomach is all better and her doc told > her that we > have some of the same chemicals in our stomach as we do in our brain, > and that > the Prozac is helping her stomach. He said that an antidepressant can > do that. > For myself, I have had a very sensitive stomach for years, ever since > I had gotten > a bleeding ulcer from Relafen. I have been taking Lexipro > (antidepressant and > antianxiety med) for a couple of months now, and I have noticed that > my stomach > seems much better...such as..I can have a cup of coffee without > heartburn or my > stomach giving me grief....same thing with other foods that used to > bother..now > they don't. > > What do the rest of you think about this? I plan to ask my rhuemy when > I see him > in a couple of months. > > Thanking you now for comments... > > Wisconsin, > Tricia > > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > The materials and information contained in this message are not > intended to replace the services of a trained health professional or > to be a substitute for medical advice of physicians and/or other > health care professionals. The International Still's Disease > Foundation is not engaged in rendering medical or professional medical > services. You should consult your physician on specific medical > questions, particularly in matters requiring diagnosis or medical > attention. The International Still's Disease Foundation makes no > representations or warranties with respect to any treatment, action, > application, medication or preparation by any person following the > information offered or provided within this support form. > > ion by any person following the information offered or provided > within this support form. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Couple ways to look at this, one the hollistic { not word I want but can't think of correct one..} sort of way where if ones mind is at peace their body responds better...Other hand, ones body produces more acid when under stress, if one is taking something to help with anxiety andstress, the nless stomach acid is produced leading to a happier belly. I think. Basically, I don't really care, I am just happy your tummy feels a bit better!!! G.ot F.M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Couple ways to look at this, one the hollistic { not word I want but can't think of correct one..} sort of way where if ones mind is at peace their body responds better...Other hand, ones body produces more acid when under stress, if one is taking something to help with anxiety andstress, the nless stomach acid is produced leading to a happier belly. I think. Basically, I don't really care, I am just happy your tummy feels a bit better!!! G.ot F.M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2012 Report Share Posted February 24, 2012 My name is Tom Donohue, I am the founding director for a Charlottesville, VA based national organization called Who's Positive. We humanize HIV nationally through firsthand accounts of those living with or affected by HIV/AIDS. Additionally, I sit on the board of Trustees for the National Association of People living with AIDS based in Washington, DC (NAPWA-US) The reason I am writing you today is to ask a favor, In May I will be testifying before a committee of the FDA to offer our insight on a proposed over-the-counter oral, rapid (results in less than 20 minutes) HIV Test. This means, if approved by the FDA, anyone can go to a retail store to find out their HIV status in under twenty minutes. We'd like to know how people feel about this. We have created a 3 question poll and would like your thoughts, and then if you would consider sharing the poll through your social network sites we'd greatly appreciate it. Copy and paste if you'd like: Would you support an HIV test which u could get at a retail store and know your status in 20 mins? #whospositive http://www.whospositive.org/survey Please feel free to let us know what you think and help us out. Since we encourage everyone to know their status, we encourage everyone to let us know what they think. Thank you so much for your time and appreciate any support you can offer. We will be publishing the results of this survey via a wire service and presenting the results to the FDA in May. Again, Thank you! Tom Donohue Founding Director, Who's Positive http://www.whospositive.org Twitter: @whospositive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Vern, I couldn't agree more. I find this very ill-conceived. I see parents marching their kids to the drug stores, universities requiring the test as part of the admission process, social networking and dating websites stipulating it or " recommending " it. Same with potential employers, people who are dating, angry or suspecting spouses and partners marching their cheating counterparts to the drug stores, prisoners, or anyone at the wrong end of the balance of power without any support if they test positive. I see suicides, overwhelmed local ASO's, federal, state and local governments, bankrupt ADAPS, drug shortages and drug prices skyrocketing b/c of the demand. I also the loss of the freedom ( because of pressure) to test when individuals are unable to deal with the information... whether it be financially, professionally , medically or spiritually. People need to be prepared to be able to absorb and productively deal with this diagnosis. The results can be disasterous without counseling, support and privacy. Depending on who marched you to the drug store, or who someone's partner may decided to tell, there is a potential for blackmail, humiliation, and grave breaches of privacy. Phil > > I think this idea, however the intention, could be very dangerous to people if one was to test positive without follow up testing to confirm a positive result. Most county health departments offer a rapid test for free and follow it up if any positive results with the blood test to confirm. They also have trained professionals to counsel anyone that is being tested, positive or not. > While I do favor the idea of people knowing their status, I think this idea hasn't been thought all the way through. > Even if there were an 800 number in the test instructions, who would read it that far after seeing POSITIVE? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Didn’t someone offer this type of test at one point only for it to be taken off the market? A bad batch of these types of tests could spur god knows anything especially if someone overreacts if they misread the test. In theory, you can’t have this for an infectious disease. They may as well have a self diagnosis cancer test as well if that’s the case. How would doctors feel about that? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Didn’t someone offer this type of test at one point only for it to be taken off the market? A bad batch of these types of tests could spur god knows anything especially if someone overreacts if they misread the test. In theory, you can’t have this for an infectious disease. They may as well have a self diagnosis cancer test as well if that’s the case. How would doctors feel about that? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 I hope everyone took the time to respond to the survey, so all of our voices can be compiled by the agency whose representative posted the question. I suspect this is a done deal and these kits will be marketed. A lot of folks have been discussing this for a couple of years, so considerable thought and debate has occurred. The only real questions, I believe, is when, how their sale will be restricted and what packaging materials and support services will be required. Although I share some of the concerns voiced here, I'd like to provide some other thoughts: I think we need to be careful not to infantalize our community. I'm concerned whenever folks express a desire to restrict access to what might be a useful resource for some based on assumed misuse by others. While it's true the current model used by most health departments involves a second confirmation test, health departments do not always counsel those who test negative. There is already a home test kit available which requires folks to depend on phone counseling. I acknowledge there are two big differences - first you have to call them to get your results, and second, the results are reported by the manufacturer via existing surveillance systems which creates an opportunity for local follow up. 20% of the HIV+ folks in the US do not know they are positive. Funding for HIV prevention has always been and is likely to continue to be woefully inadequate. Although testing and counseling get the biggest chunk, we still obviously aren't reaching everyone. Some argue that significant reasons include mistrust of government and other institutions, fear caused by laws that criminalize failure to disclose, and the reality of surveillance. Anonymous testing, which has officially become nearly nonexistent because of funding incentives, would be restored by such a product. Phil said: " I see parents marching their kids to the drug stores, universities requiring the test as part of the admission process, social networking and dating websites stipulating it or " recommending " it. Same with potential employers, people who are dating, angry or suspecting spouses and partners marching their cheating counterparts to the drug stores, prisoners, or anyone at the wrong end of the balance of power without any support if they test positive. " While I concede that this product would make it easier, parents and partners could already do this with current testing options. So could universities and hookup sites, although I suspect they would be subject to major lawsuits, and that's why they haven't. It is illegal for employers to do this. If my understanding of the law is accurate, some prisoners are already subject to mandatory testing based on the crime they committed, but in general what's more common is opt out testing. I don't believe the question is whether support would be available, it's one of whether the person tested would seek it. Phil also said: " I see suicides, overwhelmed local ASO's, federal, state and local governments, bankrupt ADAPS, drug shortages and drug prices skyrocketing b/c of the demand. " I and others worried about suicides when rapid testing came on the radar, and those worries haven't proven to be founded. I don't understand why the rest of these things can't result from conventional testing, and in fact to a moderate degree they already have due to expanded testing(for instance this is at the root of much of the problem in Florida.) Likewise regarding concerns about inappropriate disclosure, " blackmail, humiliation, and grave breaches of privacy. " So, even though increased testing has yielded these new diagnoses which have resulted in ADAP waiting lists, we haven't seen manufacture based drug shortages to any significant degree, or price increases that can be linked to the additional diagnoses. Although prices aren't undeal, they are subject to major pressures from the organized advocacy of the Drug Pricing Coalition and pressures from the consolidated buying power of insurance companies, state AIDS directors, and Medicare. Demand in terms of increased use a of a product has not historically caused price increases. Demand in terms of product uniqueness has (in the case of a new class of drugs, or Norvir which didn't have a competitor). In any case, I'd never put myself in the position of arguing against diagnosing any disease, much less a communicable one wherein we know transmission can be dramatically reduced with treatment. I think another reason public health officials will acquiesce to the marketing of this product is acute infection. It is believed by some that a major portion (up to half) of new infections are transmitted from folks who are newly infected themselves. We don't really have an affective way to put a dent in this, and self-testing might help, particularly if the tests are reasonably priced. Some envision this in some kind of " buddy " testing, where new partners self-test together (trust me I understand the limitations of this with regard to the window period, etc.) I'm sure there will be a lot more conversation about this. For my own part, the priorities will be to make sure marketing efforts and packaging emphasize the importance of follow up and the offering of strong support services regardless of test results. Of course it will alway be a priority to make comprehensive services including medications available to everyone who is diagnosed. mark Mark Hubbard Nashville TN > > > > I think this idea, however the intention, could be very dangerous to people if one was to test positive without follow up testing to confirm a positive result. Most county health departments offer a rapid test for free and follow it up if any positive results with the blood test to confirm. They also have trained professionals to counsel anyone that is being tested, positive or not. > > While I do favor the idea of people knowing their status, I think this idea hasn't been thought all the way through. > > Even if there were an 800 number in the test instructions, who would read it that far after seeing POSITIVE? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 I hope everyone took the time to respond to the survey, so all of our voices can be compiled by the agency whose representative posted the question. I suspect this is a done deal and these kits will be marketed. A lot of folks have been discussing this for a couple of years, so considerable thought and debate has occurred. The only real questions, I believe, is when, how their sale will be restricted and what packaging materials and support services will be required. Although I share some of the concerns voiced here, I'd like to provide some other thoughts: I think we need to be careful not to infantalize our community. I'm concerned whenever folks express a desire to restrict access to what might be a useful resource for some based on assumed misuse by others. While it's true the current model used by most health departments involves a second confirmation test, health departments do not always counsel those who test negative. There is already a home test kit available which requires folks to depend on phone counseling. I acknowledge there are two big differences - first you have to call them to get your results, and second, the results are reported by the manufacturer via existing surveillance systems which creates an opportunity for local follow up. 20% of the HIV+ folks in the US do not know they are positive. Funding for HIV prevention has always been and is likely to continue to be woefully inadequate. Although testing and counseling get the biggest chunk, we still obviously aren't reaching everyone. Some argue that significant reasons include mistrust of government and other institutions, fear caused by laws that criminalize failure to disclose, and the reality of surveillance. Anonymous testing, which has officially become nearly nonexistent because of funding incentives, would be restored by such a product. Phil said: " I see parents marching their kids to the drug stores, universities requiring the test as part of the admission process, social networking and dating websites stipulating it or " recommending " it. Same with potential employers, people who are dating, angry or suspecting spouses and partners marching their cheating counterparts to the drug stores, prisoners, or anyone at the wrong end of the balance of power without any support if they test positive. " While I concede that this product would make it easier, parents and partners could already do this with current testing options. So could universities and hookup sites, although I suspect they would be subject to major lawsuits, and that's why they haven't. It is illegal for employers to do this. If my understanding of the law is accurate, some prisoners are already subject to mandatory testing based on the crime they committed, but in general what's more common is opt out testing. I don't believe the question is whether support would be available, it's one of whether the person tested would seek it. Phil also said: " I see suicides, overwhelmed local ASO's, federal, state and local governments, bankrupt ADAPS, drug shortages and drug prices skyrocketing b/c of the demand. " I and others worried about suicides when rapid testing came on the radar, and those worries haven't proven to be founded. I don't understand why the rest of these things can't result from conventional testing, and in fact to a moderate degree they already have due to expanded testing(for instance this is at the root of much of the problem in Florida.) Likewise regarding concerns about inappropriate disclosure, " blackmail, humiliation, and grave breaches of privacy. " So, even though increased testing has yielded these new diagnoses which have resulted in ADAP waiting lists, we haven't seen manufacture based drug shortages to any significant degree, or price increases that can be linked to the additional diagnoses. Although prices aren't undeal, they are subject to major pressures from the organized advocacy of the Drug Pricing Coalition and pressures from the consolidated buying power of insurance companies, state AIDS directors, and Medicare. Demand in terms of increased use a of a product has not historically caused price increases. Demand in terms of product uniqueness has (in the case of a new class of drugs, or Norvir which didn't have a competitor). In any case, I'd never put myself in the position of arguing against diagnosing any disease, much less a communicable one wherein we know transmission can be dramatically reduced with treatment. I think another reason public health officials will acquiesce to the marketing of this product is acute infection. It is believed by some that a major portion (up to half) of new infections are transmitted from folks who are newly infected themselves. We don't really have an affective way to put a dent in this, and self-testing might help, particularly if the tests are reasonably priced. Some envision this in some kind of " buddy " testing, where new partners self-test together (trust me I understand the limitations of this with regard to the window period, etc.) I'm sure there will be a lot more conversation about this. For my own part, the priorities will be to make sure marketing efforts and packaging emphasize the importance of follow up and the offering of strong support services regardless of test results. Of course it will alway be a priority to make comprehensive services including medications available to everyone who is diagnosed. mark Mark Hubbard Nashville TN > > > > I think this idea, however the intention, could be very dangerous to people if one was to test positive without follow up testing to confirm a positive result. Most county health departments offer a rapid test for free and follow it up if any positive results with the blood test to confirm. They also have trained professionals to counsel anyone that is being tested, positive or not. > > While I do favor the idea of people knowing their status, I think this idea hasn't been thought all the way through. > > Even if there were an 800 number in the test instructions, who would read it that far after seeing POSITIVE? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 I'm of two minds on this. While I certainly see how in the wrong hands it could be problematic, I'm not so sure we should just throw out the baby with the bathwater on this.... I'm continually amazed at the equanimity with which my peers now accept their positive test results. A far cry from when I found out--it was literally a death sentence and we all freaked out and made suicide pacts and the like. These days the response seems to be more " I took chances, and lost. I have only myself to blame, and I'll just deal with it. " Often the one who freaks out is the positive partner in a relationship who blames himself entirely for the chances they both took. Granted this is in relatively well-educated gay men who've had 30 yrs of living with HIV, so I realize this isn't generalizable to everyone. But given how few people actually test, something that reduces barriers is a good thing in my book. An alarming number of those who do never return for their results. So something people can do in the privacy of their own homes without the stigma of going to a testing site could be useful. Existing laws should prevent most of the nightmare scenarios described below. No law is going to protect against a jealous spouse or partner. And we all know how meaningless the test results are that we see people trumpeting in their online dating/hookup profiles..... A better response is to make routine testing a part of every healthcare encounter. UC San Diego is piloting a blanket door-to-door testing campaign called " Lead The Way " where they go to every household in a zip code and offer free & confidential testing to everyone in the household. The idea being that if everyone is getting tested, there's no stigma. Of course people are offered counseling and treatment. Universal testing and immediate treatment is our only currently workable strategy to stop this epidemic (not to mention in the best interest of those who are infected) So rather than knee jerk responses to possible problems, we'd be better served by adding new methods to our armamentarium and finding ways to make them work. My two cents, Jeff > > > > I think this idea, however the intention, could be very dangerous to people if one was to test positive without follow up testing to confirm a positive result. Most county health departments offer a rapid test for free and follow it up if any positive results with the blood test to confirm. They also have trained professionals to counsel anyone that is being tested, positive or not. > > While I do favor the idea of people knowing their status, I think this idea hasn't been thought all the way through. > > Even if there were an 800 number in the test instructions, who would read it that far after seeing POSITIVE? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 I'm of two minds on this. While I certainly see how in the wrong hands it could be problematic, I'm not so sure we should just throw out the baby with the bathwater on this.... I'm continually amazed at the equanimity with which my peers now accept their positive test results. A far cry from when I found out--it was literally a death sentence and we all freaked out and made suicide pacts and the like. These days the response seems to be more " I took chances, and lost. I have only myself to blame, and I'll just deal with it. " Often the one who freaks out is the positive partner in a relationship who blames himself entirely for the chances they both took. Granted this is in relatively well-educated gay men who've had 30 yrs of living with HIV, so I realize this isn't generalizable to everyone. But given how few people actually test, something that reduces barriers is a good thing in my book. An alarming number of those who do never return for their results. So something people can do in the privacy of their own homes without the stigma of going to a testing site could be useful. Existing laws should prevent most of the nightmare scenarios described below. No law is going to protect against a jealous spouse or partner. And we all know how meaningless the test results are that we see people trumpeting in their online dating/hookup profiles..... A better response is to make routine testing a part of every healthcare encounter. UC San Diego is piloting a blanket door-to-door testing campaign called " Lead The Way " where they go to every household in a zip code and offer free & confidential testing to everyone in the household. The idea being that if everyone is getting tested, there's no stigma. Of course people are offered counseling and treatment. Universal testing and immediate treatment is our only currently workable strategy to stop this epidemic (not to mention in the best interest of those who are infected) So rather than knee jerk responses to possible problems, we'd be better served by adding new methods to our armamentarium and finding ways to make them work. My two cents, Jeff > > > > I think this idea, however the intention, could be very dangerous to people if one was to test positive without follow up testing to confirm a positive result. Most county health departments offer a rapid test for free and follow it up if any positive results with the blood test to confirm. They also have trained professionals to counsel anyone that is being tested, positive or not. > > While I do favor the idea of people knowing their status, I think this idea hasn't been thought all the way through. > > Even if there were an 800 number in the test instructions, who would read it that far after seeing POSITIVE? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 I think the product is very much needed, and i applaud it. as i wrote in the survey, when i tested positive anonymously i had a few pertinent questions for the counselor who gave me my results, and then tuned him out completely. to his credit, he noted this and allowed me to go on my way...God help him indeed if he had tried a more heavy-handed approach. many like myself have an exquisite sense of when a well-meaning other is trying to infantilize us...and some of us have no tolerance for that whatsoever. Nanny-State mentality stops ice-cold at my feet...i recall well one instance living in the Bronx in the mid-90's trying to schedule an anonymous test over the phone. i had the bad luck of getting an especially " by the book " social-services twerp who could not take the hint that i neither wanted or needed to share my " feelings " with him. when i tried to assure him of my extensive knowledge of the ELISA test and of HIV in general and even of the then-recent breakthroughs in treatment, i apparently made the mistake of noting that i didn't want an overbearing Government worker prying into my life and emotions...big mistake. Oklahoma City was still a major news item, and he alarmingly asked " you hate Government intrusion and feel we're out to get you? (his words, not mine) do you have access to weapons? " i looked at the handset of my phone in shocked disgust, and slammed the phone down. i didnt schedule that test for another year. many counselors r themselves barriers to testing, and nothing on Earth can convince them of this. properly designed and marketed, and with the right materials included, this test could do far more good than harm. i look forward to it. Jeton > > > > > > > > > > I think this idea, however the intention, could be very dangerous to people if one was to test positive without follow up testing to confirm a positive result. Most county health departments offer a rapid test for free and follow it up if any positive results with the blood test to confirm. They also have trained professionals to counsel anyone that is being tested, positive or not. > > > While I do favor the idea of people knowing their status, I think this idea hasn't been thought all the way through. > > > Even if there were an 800 number in the test instructions, who would read it that far after seeing POSITIVE? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 I think the product is very much needed, and i applaud it. as i wrote in the survey, when i tested positive anonymously i had a few pertinent questions for the counselor who gave me my results, and then tuned him out completely. to his credit, he noted this and allowed me to go on my way...God help him indeed if he had tried a more heavy-handed approach. many like myself have an exquisite sense of when a well-meaning other is trying to infantilize us...and some of us have no tolerance for that whatsoever. Nanny-State mentality stops ice-cold at my feet...i recall well one instance living in the Bronx in the mid-90's trying to schedule an anonymous test over the phone. i had the bad luck of getting an especially " by the book " social-services twerp who could not take the hint that i neither wanted or needed to share my " feelings " with him. when i tried to assure him of my extensive knowledge of the ELISA test and of HIV in general and even of the then-recent breakthroughs in treatment, i apparently made the mistake of noting that i didn't want an overbearing Government worker prying into my life and emotions...big mistake. Oklahoma City was still a major news item, and he alarmingly asked " you hate Government intrusion and feel we're out to get you? (his words, not mine) do you have access to weapons? " i looked at the handset of my phone in shocked disgust, and slammed the phone down. i didnt schedule that test for another year. many counselors r themselves barriers to testing, and nothing on Earth can convince them of this. properly designed and marketed, and with the right materials included, this test could do far more good than harm. i look forward to it. Jeton > > > > > > > > > > I think this idea, however the intention, could be very dangerous to people if one was to test positive without follow up testing to confirm a positive result. Most county health departments offer a rapid test for free and follow it up if any positive results with the blood test to confirm. They also have trained professionals to counsel anyone that is being tested, positive or not. > > > While I do favor the idea of people knowing their status, I think this idea hasn't been thought all the way through. > > > Even if there were an 800 number in the test instructions, who would read it that far after seeing POSITIVE? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Tony, I agree with most of your points (somewhat), but as to your last point, that would be my concern.I think back to the experiences many of us had when NewFill/Sculptra was still going through the FDA approval process. LOts of NewFill patients testified what a big difference it had made in their lives, and that testmony was crucial to getting the FDA approval "on label" for facial wasting in HIV patients. We all knew it was the off-label market they cared about all along, and sure enough the two-vial pack went from $450 to $1600 after approval. Check the Sculptra website now. See any mention of HIV patients? Hint: no. Of course the profit motive has to be there for any advancements, but this case was really shocking as to how quickly and brazenly it became "all about the money".My point is, if/when they get approval, who really believes they'll be too concerned about the right materials, or making sure people get access to the counseling they need? Yes, I'm probably too cynical, but I'd bet it'll be the same M.O. as the Sculptra approval. Once the money starts rolling in, I don't trust them to give a crap.> properly designed and marketed, and with the right materials included, this test could do far more good than harm. i look forward to it. > Jeton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Tony, I agree with most of your points (somewhat), but as to your last point, that would be my concern.I think back to the experiences many of us had when NewFill/Sculptra was still going through the FDA approval process. LOts of NewFill patients testified what a big difference it had made in their lives, and that testmony was crucial to getting the FDA approval "on label" for facial wasting in HIV patients. We all knew it was the off-label market they cared about all along, and sure enough the two-vial pack went from $450 to $1600 after approval. Check the Sculptra website now. See any mention of HIV patients? Hint: no. Of course the profit motive has to be there for any advancements, but this case was really shocking as to how quickly and brazenly it became "all about the money".My point is, if/when they get approval, who really believes they'll be too concerned about the right materials, or making sure people get access to the counseling they need? Yes, I'm probably too cynical, but I'd bet it'll be the same M.O. as the Sculptra approval. Once the money starts rolling in, I don't trust them to give a crap.> properly designed and marketed, and with the right materials included, this test could do far more good than harm. i look forward to it. > Jeton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 I think that Jeton speaks for many people who: - are informed or at least smart - maybe went to college ( 30% of the US population ) - have computer access and a will and ability to do some research - have an internet connection - are not already sick - are not already stressed out of their minds from their lives, and are able to make rational decisions about what this diagnosis means for them - are fundamentally psychologically stable - have a reasonable IQ - fully understand how infection occurs so that they don’t become ny Appleseed. - are capable to navigate the patchwork ASO , ADAP, and insurance networks and get themselves care One an individual tests positive, the next thing that usually happens is a test to determine viral load and then meds if necessary. I worry about people who may be disenfranchised in some way even knowing that they have to take this next step ( although I haven’t seen the instructions that the manufacturer includes), and I wonder, as someone else pointed out, if many people will even read that far if hey test positive . This would be a good time for a counselor to give the new hiv consumer a face to face primer on what the next steps are. The good thing about this test is that people who might not normally know their status will find out, and maybe most of those people will change their sexual practices to avoid infecting anyone else. Many, if not most, people are not so savvy and I believe are in far better hands if they get this information from a counselor or doctor who can guide them, get them to the next step and hopefully prevent some folks from catastrophizing this information. I have seen otherwise stable people fall apart when they get this information, especially if they thought that the test was routine and that they had no reason to stress about the results. Phil ------------------------------------------------------------------------------------------------------------- (Jeton said ) I think the product is very much needed, and i applaud it. as i wrote in the survey, when i tested positive anonymously i had a few pertinent questions for the counselor who gave me my results, and then tuned him out completely. to his credit, he noted this and allowed me to go on my way...God help him indeed if he had tried a more heavy-handed approach. many like myself have an exquisite sense of when a well-meaning other is trying to infantilize us...and some of us have no tolerance for that whatsoever. Nanny-State mentality stops ice-cold at my feet...i recall well one instance living in the Bronx in the mid-90's trying to schedule an anonymous test over the phone. i had the bad luck of getting an especially " by the book " social-services twerp who could not take the hint that i neither wanted or needed to share my " feelings " with him. when i tried to assure him of my extensive knowledge of the ELISA test and of HIV in general and even of the then-recent breakthroughs in treatment, i apparently made the mistake of noting that i didn't want an overbearing Government worker prying into my life and emotions...big mistake. Oklahoma City was still a major news item, and he alarmingly asked " you hate Government intrusion and feel we're out to get you? (his words, not mine) do you have access to weapons? " i looked at the handset of my phone in shocked disgust, and slammed the phone down. i didnt schedule that test for another year. many counselors r themselves barriers to testing, and nothing on Earth can convince them of this. properly designed and marketed, and with the right materials included, this test could do far more good than harm. i look forward to it. Jeton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 I think that Jeton speaks for many people who: - are informed or at least smart - maybe went to college ( 30% of the US population ) - have computer access and a will and ability to do some research - have an internet connection - are not already sick - are not already stressed out of their minds from their lives, and are able to make rational decisions about what this diagnosis means for them - are fundamentally psychologically stable - have a reasonable IQ - fully understand how infection occurs so that they don’t become ny Appleseed. - are capable to navigate the patchwork ASO , ADAP, and insurance networks and get themselves care One an individual tests positive, the next thing that usually happens is a test to determine viral load and then meds if necessary. I worry about people who may be disenfranchised in some way even knowing that they have to take this next step ( although I haven’t seen the instructions that the manufacturer includes), and I wonder, as someone else pointed out, if many people will even read that far if hey test positive . This would be a good time for a counselor to give the new hiv consumer a face to face primer on what the next steps are. The good thing about this test is that people who might not normally know their status will find out, and maybe most of those people will change their sexual practices to avoid infecting anyone else. Many, if not most, people are not so savvy and I believe are in far better hands if they get this information from a counselor or doctor who can guide them, get them to the next step and hopefully prevent some folks from catastrophizing this information. I have seen otherwise stable people fall apart when they get this information, especially if they thought that the test was routine and that they had no reason to stress about the results. Phil ------------------------------------------------------------------------------------------------------------- (Jeton said ) I think the product is very much needed, and i applaud it. as i wrote in the survey, when i tested positive anonymously i had a few pertinent questions for the counselor who gave me my results, and then tuned him out completely. to his credit, he noted this and allowed me to go on my way...God help him indeed if he had tried a more heavy-handed approach. many like myself have an exquisite sense of when a well-meaning other is trying to infantilize us...and some of us have no tolerance for that whatsoever. Nanny-State mentality stops ice-cold at my feet...i recall well one instance living in the Bronx in the mid-90's trying to schedule an anonymous test over the phone. i had the bad luck of getting an especially " by the book " social-services twerp who could not take the hint that i neither wanted or needed to share my " feelings " with him. when i tried to assure him of my extensive knowledge of the ELISA test and of HIV in general and even of the then-recent breakthroughs in treatment, i apparently made the mistake of noting that i didn't want an overbearing Government worker prying into my life and emotions...big mistake. Oklahoma City was still a major news item, and he alarmingly asked " you hate Government intrusion and feel we're out to get you? (his words, not mine) do you have access to weapons? " i looked at the handset of my phone in shocked disgust, and slammed the phone down. i didnt schedule that test for another year. many counselors r themselves barriers to testing, and nothing on Earth can convince them of this. properly designed and marketed, and with the right materials included, this test could do far more good than harm. i look forward to it. Jeton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2012 Report Share Posted February 28, 2012 There are some differences between this product and Sculptra. Sculptra is not an over-the-counter (OTC) product and cannot be self-administered. Over the counter products must meet a much higher standard in terms of things like risk/benefit and safety. I believe the approval of this product can and likely will include requirements for support that will be closely monitored, and I think that's where our advocacy efforts should go - including things like including consumers in materials design. mark Nashville > > > properly designed and marketed, and with the right materials included, > this test could do far more good than harm. i look forward to it. > > > Jeton > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2012 Report Share Posted February 28, 2012 There are some differences between this product and Sculptra. Sculptra is not an over-the-counter (OTC) product and cannot be self-administered. Over the counter products must meet a much higher standard in terms of things like risk/benefit and safety. I believe the approval of this product can and likely will include requirements for support that will be closely monitored, and I think that's where our advocacy efforts should go - including things like including consumers in materials design. mark Nashville > > > properly designed and marketed, and with the right materials included, > this test could do far more good than harm. i look forward to it. > > > Jeton > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2012 Report Share Posted February 28, 2012 In terms of perspective, we should remember that under the CURRENT system of testing, a vast number of folks in many jurisdiction do not enter into care until they already have an AIDS diagnosis. For many of these, the diagnosis comes after / as a result of going to a doctor or (more often) hospital already very sick. Current changes under White and the US National HIV/AIDS Strategy provide incentives for states to strive to improve this, but at this point the resources really only cover collecting data and reporting on it. Such folks can only be impacted by this product in a positive way. In other words, if you were on a track of denial and avoidance, having another option for testing, especially one that may make it " safer " for you in terms of privacy and anonymity, can only help you know your status earlier. If you were destined to enter care only when you became sick, this product can't worsen that outcome, and there's at least a chance that by knowing earlier you'll reconsider that path over time. If we assume that the product, not unlike today's agency-administered quick tests, will clearly state that a patient can't really know their status without a confirmatory test, then we better understand the linkage to care - and therefore to things like counseling, labs, and doctor visits. Since quick-tests as screening tests are much more likely " err to positive, " I'd think most folks who get a " preliminary positive " or " reactive " result will want to explore the small possibility that the test is wrong, and when they access that confirmatory test they are going to have to access the system of care. I should say that I have no stake in this product. I also acknowledge that as now, there will probably be some negative outcomes associated with testing. Based on our experience with similar discussions with quick testing and the reality of how things came to pass, however, I think we can predict with some confidence both that the number of those will not be disproportionate with current testing and that the potential for good outcomes will outweight the bad ones. This product won't change the really big problems: Some people are in denial about their risk. We have a crazy inability to frankly discuss sex in the US. Gross underfunding of HIV education in general. Resources for care remain inadequate. It's not all gloom and doom, however. Recent research gives us a stronger argument than ever that treatment is a smart, cost-effective, disease burden reducing public health strategy. Although stigma remains a huge problem, the already increased testing with recent initiatives has made some small headway in terms of normalizing testing. Technologies that can augment the effectiveness for condoms or reduce risk for whom their use is problematic are on the horizon. Health Care reform, if it is not derailed, may go a long way to reduce the problems with access to care (treatment.) mark Nashville > > > I think that Jeton speaks for many people who: > > - are informed or at least smart > - maybe went to college ( 30% of the US population ) > - have computer access and a will and ability to do some research > - have an internet connection > - are not already sick > - are not already stressed out of their minds from their lives, and > are able to make rational decisions about what this diagnosis means for them > - are fundamentally psychologically stable > - have a reasonable IQ > - fully understand how infection occurs so that they don't become > ny Appleseed. > - are capable to navigate the patchwork ASO , ADAP, and insurance > networks and get themselves care > > One an individual tests positive, the next thing that usually happens is a > test to determine viral load and then meds if necessary. I worry about > people who may be disenfranchised in some way even knowing that they have to > take this next step ( although I haven't seen the instructions that the > manufacturer includes), and I wonder, as someone else pointed out, if many > people will even read that far if hey test positive . This would be a good > time for a counselor to give the new hiv consumer a face to face primer on > what the next steps are. > > > The good thing about this test is that people who might not normally know > their status will find out, and maybe most of those people will change their > sexual practices to avoid infecting anyone else. > > Many, if not most, people are not so savvy and I believe are in far better > hands if they get this information from a counselor or doctor who can guide > them, get them to the next step and hopefully prevent some folks from > catastrophizing this information. I have seen otherwise stable people fall > apart when they get this information, especially if they thought that the > test was routine and that they had no reason to stress about the results. > > Phil > > ---------------------------------------------------------------------------- > --------------------------------- > (Jeton said ) > I think the product is very much needed, and i applaud it. as i wrote in the > survey, when i tested positive anonymously i had a few pertinent questions > for the counselor who gave me my results, and then tuned him out completely. > to his credit, he noted this and allowed me to go on my way...God help him > indeed if he had tried a more heavy-handed approach. > > many like myself have an exquisite sense of when a well-meaning other is > trying to infantilize us...and some of us have no tolerance for that > whatsoever. Nanny-State mentality stops ice-cold at my feet...i recall well > one instance living in the Bronx in the mid-90's trying to schedule an > anonymous test over the phone. i had the bad luck of getting an especially > " by the book " social-services twerp who could not take the hint that i > neither wanted or needed to share my " feelings " with him. when i tried to > assure him of my extensive knowledge of the ELISA test and of HIV in general > and even of the then-recent breakthroughs in treatment, i apparently made > the mistake of noting that i didn't want an overbearing Government worker > prying into my life and emotions...big mistake. Oklahoma City was still a > major news item, and he alarmingly asked " you hate Government intrusion and > feel we're out to get you? (his words, not mine) do you have access to > weapons? " > > i looked at the handset of my phone in shocked disgust, and slammed the > phone down. i didnt schedule that test for another year. many counselors r > themselves barriers to testing, and nothing on Earth can convince them of > this. > > properly designed and marketed, and with the right materials included, this > test could do far more good than harm. i look forward to it. > > Jeton > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2012 Report Share Posted February 28, 2012 In terms of perspective, we should remember that under the CURRENT system of testing, a vast number of folks in many jurisdiction do not enter into care until they already have an AIDS diagnosis. For many of these, the diagnosis comes after / as a result of going to a doctor or (more often) hospital already very sick. Current changes under White and the US National HIV/AIDS Strategy provide incentives for states to strive to improve this, but at this point the resources really only cover collecting data and reporting on it. Such folks can only be impacted by this product in a positive way. In other words, if you were on a track of denial and avoidance, having another option for testing, especially one that may make it " safer " for you in terms of privacy and anonymity, can only help you know your status earlier. If you were destined to enter care only when you became sick, this product can't worsen that outcome, and there's at least a chance that by knowing earlier you'll reconsider that path over time. If we assume that the product, not unlike today's agency-administered quick tests, will clearly state that a patient can't really know their status without a confirmatory test, then we better understand the linkage to care - and therefore to things like counseling, labs, and doctor visits. Since quick-tests as screening tests are much more likely " err to positive, " I'd think most folks who get a " preliminary positive " or " reactive " result will want to explore the small possibility that the test is wrong, and when they access that confirmatory test they are going to have to access the system of care. I should say that I have no stake in this product. I also acknowledge that as now, there will probably be some negative outcomes associated with testing. Based on our experience with similar discussions with quick testing and the reality of how things came to pass, however, I think we can predict with some confidence both that the number of those will not be disproportionate with current testing and that the potential for good outcomes will outweight the bad ones. This product won't change the really big problems: Some people are in denial about their risk. We have a crazy inability to frankly discuss sex in the US. Gross underfunding of HIV education in general. Resources for care remain inadequate. It's not all gloom and doom, however. Recent research gives us a stronger argument than ever that treatment is a smart, cost-effective, disease burden reducing public health strategy. Although stigma remains a huge problem, the already increased testing with recent initiatives has made some small headway in terms of normalizing testing. Technologies that can augment the effectiveness for condoms or reduce risk for whom their use is problematic are on the horizon. Health Care reform, if it is not derailed, may go a long way to reduce the problems with access to care (treatment.) mark Nashville > > > I think that Jeton speaks for many people who: > > - are informed or at least smart > - maybe went to college ( 30% of the US population ) > - have computer access and a will and ability to do some research > - have an internet connection > - are not already sick > - are not already stressed out of their minds from their lives, and > are able to make rational decisions about what this diagnosis means for them > - are fundamentally psychologically stable > - have a reasonable IQ > - fully understand how infection occurs so that they don't become > ny Appleseed. > - are capable to navigate the patchwork ASO , ADAP, and insurance > networks and get themselves care > > One an individual tests positive, the next thing that usually happens is a > test to determine viral load and then meds if necessary. I worry about > people who may be disenfranchised in some way even knowing that they have to > take this next step ( although I haven't seen the instructions that the > manufacturer includes), and I wonder, as someone else pointed out, if many > people will even read that far if hey test positive . This would be a good > time for a counselor to give the new hiv consumer a face to face primer on > what the next steps are. > > > The good thing about this test is that people who might not normally know > their status will find out, and maybe most of those people will change their > sexual practices to avoid infecting anyone else. > > Many, if not most, people are not so savvy and I believe are in far better > hands if they get this information from a counselor or doctor who can guide > them, get them to the next step and hopefully prevent some folks from > catastrophizing this information. I have seen otherwise stable people fall > apart when they get this information, especially if they thought that the > test was routine and that they had no reason to stress about the results. > > Phil > > ---------------------------------------------------------------------------- > --------------------------------- > (Jeton said ) > I think the product is very much needed, and i applaud it. as i wrote in the > survey, when i tested positive anonymously i had a few pertinent questions > for the counselor who gave me my results, and then tuned him out completely. > to his credit, he noted this and allowed me to go on my way...God help him > indeed if he had tried a more heavy-handed approach. > > many like myself have an exquisite sense of when a well-meaning other is > trying to infantilize us...and some of us have no tolerance for that > whatsoever. Nanny-State mentality stops ice-cold at my feet...i recall well > one instance living in the Bronx in the mid-90's trying to schedule an > anonymous test over the phone. i had the bad luck of getting an especially > " by the book " social-services twerp who could not take the hint that i > neither wanted or needed to share my " feelings " with him. when i tried to > assure him of my extensive knowledge of the ELISA test and of HIV in general > and even of the then-recent breakthroughs in treatment, i apparently made > the mistake of noting that i didn't want an overbearing Government worker > prying into my life and emotions...big mistake. Oklahoma City was still a > major news item, and he alarmingly asked " you hate Government intrusion and > feel we're out to get you? (his words, not mine) do you have access to > weapons? " > > i looked at the handset of my phone in shocked disgust, and slammed the > phone down. i didnt schedule that test for another year. many counselors r > themselves barriers to testing, and nothing on Earth can convince them of > this. > > properly designed and marketed, and with the right materials included, this > test could do far more good than harm. i look forward to it. > > Jeton > Quote Link to comment Share on other sites More sharing options...
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