#PatientsHavePower Transcript
Healthcare social media transcript of the #PatientsHavePower hashtag.
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See #PatientsHavePower Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Rie Lopez, MPH (she/her) @RieOfLetters I am running late for the #PatientsHavePower chat, but I will be back as soon as I can #BreakthroughCrew!! |
 | Christina Lizaso @btrfly12 RT @Clara_Health: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: https://t.co/deE7xYvq6b |
 | Empowering Patients,LLC • Alison @Empoweringpts9 RT @Clara_Health: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: https://t.co/deE7xYvq6b |
 | M&B Sciences @mbsciencesinc Welcome to the June #PatientsHavePower Twitter chat where we’re covering one of the hottest healthcare policy topics: #RightToTry! |
 | Angela Cohen @angelee828 RT @Clara_Health: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: https://t.co/deE7xYvq6b |
 | Joe Babaian 🇺🇦 @JoeBabaian RT @Clara_Health: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: Excited to kick off our #PatientsHavePower Twitter chat on #RightToTry in in just minutes! Preview the questions here: https://t.co/deE7xYvq6b |
| M&B Sciences @mbsciencesinc It’s time to introduce yourself while we send out a few friendly reminders about how the chat will work! #PatientsHavePower #RightToTry |
| M&B Sciences @mbsciencesinc We will be using a Q1 A1 format with 6 questions! #PatientsHavePower #RightToTry |
| M&B Sciences @mbsciencesinc Remember to include #PatientsHavePower & #RightToTry in your tweets. |
 | Lisa Davis Budzinski @lisadbudzinski Will be trying to participate in #PatientsHavePower & #MEQAPI chats for the next hour ✨Drop by and check them out! |
| M&B Sciences @mbsciencesinc We recognize that sometimes policy topics can get well...a little heated. We would like to ask that you please be respectful of others opinions when you disagree. Refrain from personal attacks i.e. Let’s not start a Twitter war here. #PatientsHavePower #RightToTry https://t.co/UhrvdrFsXT |
 | AutonomicRN© @AutonomicRN Hey all, Kim here from WI. RN turned full-time patient, #raredisease and #patientjourney advocate, #healthcare experience and #chronicillness blogger. Excited for today's chat! #PatientsHavePower #RightToTry |
| AutonomicRN© @AutonomicRN @brkthrough_crew Glad to be here with everyone! #RightToTry #patientshavepower |
 | Kevin Freiert @K_SalemOaks Kevin from CT here. I have 30 years experience in drug develoipment and have now turned my energy to educating patients, care partners, and maybe politicians about the process. #patientshavepower #RightToTry |
| Christina Lizaso @btrfly12 Hi #PatientsHavePower - I'm passionate about community engagement and health. I'm on the patient advisory board for @Clara_Health and you can also find me tweeting #gyncsm #patientchat #nsgcgenepool |
 | Kelby 🍑 @PeachyPains Hi Everyone! I'm Kelby! I'm an Ambitious Arthritis Advocate. 17 straight years on Remicade. 93.2% organic diet. Selfie, cat, and dog photo enthusiast #patientshavepower https://t.co/HRqLpD6peQ |
 | @FacingOurRisk @FacingOurRisk We are happy to join the #PatientsHavePower #RightToTry chat for the next hour. Drop in and learn more about this important topic. |
 | Lilly Stairs @LillyStairs Lilly here! Head of Patient Advocacy @Clara_Health and eager to chat about this topic. Been trying to soak up all I can learn on #RightToTry over the past few months and looking forward to sharing and learning more!! #PatientsHavePower https://t.co/FRqlpA5Ooh |
| AutonomicRN© @AutonomicRN @btrfly12 @Clara_Health Hi Christina! #PatientsHavePower |
| Lisa Davis Budzinski @lisadbudzinski Lisa here, #intractablepain patient, advocate & co-founder of @Cpnervecenter with dynamo partner @bbhomebody #PatientsHavePower |
| AutonomicRN© @AutonomicRN @LillyStairs @Clara_Health Lilly! It's been a long time! #PatientsHavePower #RightToTry |
| AutonomicRN© @AutonomicRN @lisadbudzinski @Cpnervecenter @bbhomebody Hey Lisa! #PatientsHavePower #RightToTry |
 | aaron jun @aaronjun_ Aaron from @Clara_Health - I run marketing here. I've got some hot takes on the issue of #RightToTry and can't wait to learn from everyone here. #patientshavepower |
| Angela Cohen @angelee828 👋🏽 Hey! Angela here from Wisconsin. I’m a #BreakthroughCrew ambassador and I’ll be trying to pop in and out while at the rheumatologist. This is an important topic though, so I wanted to join live if I could! #RightToTry #PatientsHavePower |
 | nobism @nobismhealth RT @AutonomicRN: Hey all, Kim here from WI. RN turned full-time patient, #raredisease and #patientjourney advocate, #healthcare experience and #chronicillness blogger. Excited for today's chat! #PatientsHavePower #RightToTry |
| Lisa Davis Budzinski @lisadbudzinski @AutonomicRN @Cpnervecenter @bbhomebody Hi Kimbo! #PatientsHavePower |
| AutonomicRN© @AutonomicRN @angelee828 Hey! Angela, good to see you! #patientshavepower #RightToTry |
| M&B Sciences @mbsciencesinc Q1: What is your stance on #RightToTry, and why? (It’s ok to say you’re not sure or split down the middle!) #PatientsHavePower https://t.co/zjWF0pgp4F |
| Empowering Patients,LLC • Alison @Empoweringpts9 Hi. 👋🏼 I’m Alison. I have Crohn’s and an ostomy. I’m lurking the sidelines today. I think this is an important topic. #RightToTry #PatientsHavePower |
 | Heather McCullen @H_SalemOaks Hi, #PatientsHavePower Heather in Ann Arbor representing @SalemOaks (I'm pretty passionate about this topic) #RightToTry |
| Angela Cohen @angelee828 @AutonomicRN Hey Kim! Good to see you too! :) #PatientsHavePower #RightToTry |
| AutonomicRN© @AutonomicRN @Empoweringpts9 Hi Alison! #PatientsHavePower #RightToTry |
| Lilly Stairs @LillyStairs A1: (1/4) I lean towards opposing right to try for 4 reasons. The compassionate use program approves 99% of requests and has recently been made easier to apply for and they will approve within 24 hours for life-threatening cases. #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk A1: FORCE agrees critically ill patients should have the right to try treatments that may improve or save their lives. #patientshavepower |
| Lilly Stairs @LillyStairs A1: (2/4) Right To Try doesn’t change the fact that pharma is not required to pay for the drug. While I think it should be decided on a case by case basis, small biotech co’s can’t always afford to give away free drugs. #PatientsHavePower #RightToTry |
| Lilly Stairs @LillyStairs A1: (3/4) As the science is often very early on and because financial responsibility is often on the patient. It can cause false hope for patients and result in financial devastation. #PatientsHavePower #RightToTry |
 | Girls With Guts @IBDgirls This Twitter Chat about #RightToTry is going on now. #PatientsHavePower https://t.co/LOkNgIndUK |
| Lilly Stairs @LillyStairs A1 (4/4) Adverse events that occur outside of the #clinicaltrial could jeopardize the future of the therapy getting into the hands of the general public. #PatientsHavePower #RightToTry |
| aaron jun @aaronjun_ @Clara_Health A1: #RightToTry sounds nice as a phrase, but it seems to me like another instance of a broken #healthcare system passing on costs - monetary, mental health\, time - down to the #patients who are least able to fight for themselves. #PatientsHavePower |
| AutonomicRN© @AutonomicRN A1: I'm split, not 100% sold on it, but not all against. Having another option for patients and families is nice, however the risks that go along with it & circumventing the #FDA concerns me. Some processes exist for a reason #patientshavepower #righttotry |
| Kevin Freiert @K_SalemOaks @Clara_Health A1: I continue to be opposed. #RightToTry adds NO new ability for patients to access experimental treatments. It has created a confusing parallel path. It only provides sound bites and photo ops. #PatientsHavePower |
| Heather McCullen @H_SalemOaks A1: I have been strongly opposed to #RightToTry. It uses patients to advance the goal of weakening the FDA. I'm also concerned with the false narrative that the government is keeping cures from patients. #PatientsHavePower 1/2 |
| Empowering Patients,LLC • Alison @Empoweringpts9 RT @Clara_Health: Q1: Q1: What is your stance on #RightToTry, and why? (It’s ok to say you’re not sure or split down the middle!) #PatientsHavePower https://t.co/zjWF0pgp4F |
| Heather McCullen @H_SalemOaks A1: Now that #RightToTry has passed it's important for patients to be educated about their options, clinical trials, and a realistic picture of what to expect. It could help some, but there won’t be a wave of cures. #PatientsHavePower 2/2 |
| M&B Sciences @mbsciencesinc @IBDgirls Yep. #RightToTry #PatientsHavePower https://t.co/5i0caAnuSN |
| AutonomicRN© @AutonomicRN @LillyStairs I'm right there with you...couldn't have said it better. #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk FORCE is not against a patient’s right to try. We oppose some of the components of the Right-to-Try law, as written. #patientshavepower |
| Christina Lizaso @btrfly12 RT @H_SalemOaks: A1: A1: Now that #RightToTry has passed it's important for patients to be educated about their options, clinical trials, and a realistic picture of what to expect. It could help some, but there won’t be a wave of cures. #PatientsHavePower 2/2 |
| Kevin Freiert @K_SalemOaks A1: Opposed. #S204 is written at a very general level. There are no details about how the process will materially help patients compared to the current state. To say it will make it easier is deceptive. Who will be keeping track? #PatientsHavePower #RightToTry https://t.co/bnyZhYGL5e |
| Christina Lizaso @btrfly12 RT @AutonomicRN: A1: A1: I'm split, not 100% sold on it, but not all against. Having another option for patients and families is nice, however the risks that go along with it & circumventing the #FDA concerns me. Some processes exist for a reason #patientshavepower #righttotry |
| M&B Sciences @mbsciencesinc RT @LillyStairs: A1: A1: (3/4) As the science is often very early on and because financial responsibility is often on the patient. It can cause false hope for patients and result in financial devastation. #PatientsHavePower #RightToTry |
| Christina Lizaso @btrfly12 RT @aaronjun_: @Clara_Health A1: @Clara_Health A1: #RightToTry sounds nice as a phrase, but it seems to me like another instance of a broken #healthcare system passing on costs - monetary, mental health\, time - down to the #patients who are least able to fight for themselves. #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @LillyStairs: A1: A1: (2/4) Right To Try doesn’t change the fact that pharma is not required to pay for the drug. While I think it should be decided on a case by case basis, small biotech co’s can’t always afford to give away free drugs. #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk A1: Patients not eligible 4 clinical trials can utilize the FDA’s expanded-access program #patientshavepower #RightToTry |
| Lisa Davis Budzinski @lisadbudzinski A1 #RightToTry ican be the last hope a terminally ill patient has. Though there will be very little data for the Drs to go by; most patients can understand the want to try whatever is available. #PatientsHavePower https://t.co/9ZhVJtasfh |
| Angela Cohen @angelee828 @Empoweringpts9 Hi!! I feel like I know you but I’m not sure... 🧐 Either way, I’m glad you’re here!! #PatientsHavePower https://t.co/0z7tyJItM3 |
| M&B Sciences @mbsciencesinc RT @H_SalemOaks: A1: A1: I have been strongly opposed to #RightToTry. It uses patients to advance the goal of weakening the FDA. I'm also concerned with the false narrative that the government is keeping cures from patients. #PatientsHavePower 1/2 |
| Kevin Freiert @K_SalemOaks A1: Opposed #S204 means medicine developers now need to understand and address requests for compassionate use from two systems (or is it 50?). This takes time away from their R&D work. #PatientsHavePower #RightToTry |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: FORCE is not against a patient’s right to try. We oppose some of the components of the Right-to-Try law, as written. #patientshavepower |
| Empowering Patients,LLC • Alison @Empoweringpts9 @brkthrough_crew Hi! #PatientsHavePower #RightToTry https://t.co/9u3AtVuX4O |
 | Frank R. @SarcoidosisofLI #PatientsHavePower 1- I am for the Right to Try. I am a patient that is terminally ill. I was declined for 5 clinical trials and Compassionate use wasn't so compassionate for me. I was denied 2 times. |
| @FacingOurRisk @FacingOurRisk A1: The FDA approved nearly all requests 4 experimental therapy use last year. #patientshavepower #RightToTry |
| Kevin Freiert @K_SalemOaks A1: Opposed. #S204 was driven by politics, not patients. 'Sen. Ron Johnson (R., Wis.), sent Dr. Gottlieb a letter saying, “This law intends to diminish the FDA’s power over people’s lives, not increase it.”' https://t.co/9sSf2hUXv9 #PatientsHavePower #RightToTry |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: A1: A1: Patients not eligible 4 clinical trials can utilize the FDA’s expanded-access program #patientshavepower #RightToTry |
| Lilly Stairs @LillyStairs @angelee828 @Empoweringpts9 You're both @brkthrough_crew Ambassadors so that's a good start!!! #PatientsHavePower https://t.co/xLLdEXNBsc |
| Kelby 🍑 @PeachyPains A1: i think allowing access is important, but I think skipping steps, or at least using the #RightToTry as way to push the legislation through is a pretty big false statement and puts a poor outlook on clinical trials. #patientshavepower |
| AutonomicRN© @AutonomicRN Compassionate use was already approving many of the requests through the FDA. #RightToTry is taking out the middleman and with that also takes away a lot of reporting and use criteria. We often don't like what much of the gov does, we need to keep FDA involved. #PatientsHavePower |
| Kevin Freiert @K_SalemOaks @SarcoidosisofLI I am so sorry to hear about that. Did the FDA deny you or the sponsor company? #patientshavepower #RightToTry |
| Heather McCullen @H_SalemOaks @SarcoidosisofLI I don't want to be insensitive to your situation, were you denied by the FDA? #PatientsHavePower |
| @FacingOurRisk @FacingOurRisk A1: The RTT law is a duplicative and unneeded. FDA approved 5,816 of 5,849 expanded-access requests in recent yrs. #patientshavepower |
| Kelby 🍑 @PeachyPains RT @FacingOurRisk: A1: A1: The FDA approved nearly all requests 4 experimental therapy use last year. #patientshavepower #RightToTry |
| Empowering Patients,LLC • Alison @Empoweringpts9 @angelee828 🤔 #PatientsHavePower #RightToTry https://t.co/t5sEJyq7qU |
 | JMK ⭐️🌟 @Jmkilingnyc RT @SarcoidosisofLI: #PatientsHavePower 1- I am for the Right to Try. I am a patient that is terminally ill. I was declined for 5 clinical trials and Compassionate use wasn't so compassionate for me. I was denied 2 times. |
| Empowering Patients,LLC • Alison @Empoweringpts9 @LillyStairs @angelee828 @brkthrough_crew #PatientsHavePower https://t.co/EzG8s8ILm5 |
| @FacingOurRisk @FacingOurRisk The FDA expanded-access serves to protect Americans from harm. RTT circumvents this safety system. #patientshavepower |
| Lilly Stairs @LillyStairs LOVING hearing everyone's different opinions on this topic and proud to see so many patients and advocates taking an active role in understanding and speaking up for what they believe is right. #PatientsHavePower #RightToTry |
| aaron jun @aaronjun_ There tends to be a distrust of government that is much greater than distrust in for-profit companies. While the gov power should be checked, we shouldn't pretend that companies have a patient's best interests at heart - both sides need checking. #PatientsHavePower #RightToTry https://t.co/EEOqdfwpJ6 |
| @FacingOurRisk @FacingOurRisk The potential for drug companies to exploit lack of FDA oversight is a significant risk for patients. #patientshavepower #RightToTry |
| M&B Sciences @mbsciencesinc Q2: What are your thoughts on the proponent’s argument for #RightToTry? #PatientsHavePower https://t.co/zkwG2MLK3U |
| AutonomicRN© @AutonomicRN A2: There are other risks that are assumed. For terminally ill--another option is usually going to look like a bright spot. Going directly to the drug company may affect reporting for off-label usage and that may affect an entire population. #PatientsHavePower #RightToTry |
| aaron jun @aaronjun_ A1: Again, sounds nice in theory, but it's a half-baked solution. If we want to expedite the processes, we need to ensure that we aren't just creating alternate paths that have no real regulation. We should spend time improving compassionate use. #RightToTry #PatientsHavePower https://t.co/NWbjCzK6gs |
| Lilly Stairs @LillyStairs RT @PeachyPains: A1: A1: i think allowing access is important, but I think skipping steps, or at least using the #RightToTry as way to push the legislation through is a pretty big false statement and puts a poor outlook on clinical trials. #patientshavepower |
| Christina Lizaso @btrfly12 RT @aaronjun_: There tends to be a distrust of government that is much greater than distrust in for-profit companies. While the gov power should be checked, we shouldn't pretend that companies have a patient's best interests at heart - both sides need checking. #PatientsHavePower #RightToTry https://t.co/EEOqdfwpJ6 |
| @FacingOurRisk @FacingOurRisk Q2: 1800 expanded access applications were approved by the FDA in 2017. There was no need for the #RightToTry law. #patientshavepower |
| Heather McCullen @H_SalemOaks @FacingOurRisk Agree, I think it's important to recognize that even though treatments obtained through #RightToTry have to have passed phase 1 trials for safety, patients are put at greater risk for being taken advantage of, which I consider harm. #PatientsHavePower |
| M&B Sciences @mbsciencesinc @SavannaBraun Welcome to the conversation, @savannabraun! #PatientsHavePower #RightToTry |
| Kevin Freiert @K_SalemOaks A2: We all want to help patients get medicines that will help them faster. I want to see DATA that #S204 proponents have that bypassing the FDA is better for patients than compassionate use. BTW - who will track the performance of S204 requests? #PatientsHavePower #RightToTry https://t.co/3ziMwXBEsP |
| AutonomicRN© @AutonomicRN @aaronjun_ I agree that both sides need checked. There are checks and balances for a reason and we need to remember that it is a human life in the balance, not a piece of legislation that can be tossed around between house and senate. #PatientsHavePower #righttotry |
| Kelby 🍑 @PeachyPains A2: I believe that the final decision should be between the patient & the doc. However docs are kind of flying blind w/respect to things like how much of the drug to give, how to give it, what kind of side effects to look for. doesn't help anyone. #patientshavepower #RightToTry |
| @FacingOurRisk @FacingOurRisk Only about 10% of drugs that pass Phase I trials go on to be deemed safe and effective for use. #patientshavepower #RightToTry |
| M&B Sciences @mbsciencesinc RT @K_SalemOaks: A1: A1: Opposed. #S204 was driven by politics, not patients. 'Sen. Ron Johnson (R., Wis.), sent Dr. Gottlieb a letter saying, “This law intends to diminish the FDA’s power over people’s lives, not increase it.”' https://t.co/9sSf2hUXv9 #PatientsHavePower #RightToTry |
| Heather McCullen @H_SalemOaks A2: #RightToTry still leaves the decision to provide access to the pharma company. It removes the step of asking the FDA for approval, but this was already a short process with more than 99% of requests being approved. #PatientsHavePower |
| M&B Sciences @mbsciencesinc RT @PeachyPains: A1: A1: i think allowing access is important, but I think skipping steps, or at least using the #RightToTry as way to push the legislation through is a pretty big false statement and puts a poor outlook on clinical trials. #patientshavepower |
| Kelby 🍑 @PeachyPains RT @AutonomicRN: @aaronjun_ I agree that both sides need checked. There are checks and balances for a reason and we need to remember that it is a human life in the balance, not a piece of legislation that can be tossed around between house and senate. #PatientsHavePower #righttotry |
| Kevin Freiert @K_SalemOaks • A2: The vast majority of physicians are not equipped to know enough about the existence and data around experimental compounds let alone to manage the unknown benefit:risk of treating with them. Simple question - what dose will they prescribe? #PatientsHavePower #RightToTry |
| Kevin Freiert @K_SalemOaks A2: In reality, the decision still remains with the sponsor company. They know more about the experimental compound than anyone. They carry the risk despite Sec. 561b.b and c.1. FDA is not the bottleneck. #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk The law doesn’t let FDA access safety data 4 RTT patients. If a person is harmed it has implications 4 others. #patientshavepower |
| Heather McCullen @H_SalemOaks A2: It opens the very real question of should patients in an extremely vulnerable state be protected from making a desperate choice? Or should they be able to try anything? #PatientsHavePower |
| @FacingOurRisk @FacingOurRisk The RTT law doesn’t require drug manufacturers to provide access to unapproved drugs. #patientshavepower #RightToTry |
| Christina Lizaso @btrfly12 RT @K_SalemOaks: A2: A2: In reality, the decision still remains with the sponsor company. They know more about the experimental compound than anyone. They carry the risk despite Sec. 561b.b and c.1. FDA is not the bottleneck. #PatientsHavePower #RightToTry |
| aaron jun @aaronjun_ @molsarahwrites @Clara_Health Agreed. There are no shortage of ways to improve the way the FDA operates. But you don't ensure safety and ethical behavior by creating paths around oversight. #PatientsHavePower #RightToTry |
| AutonomicRN© @AutonomicRN That is something that so many patients, families and even medical population don't know and is so important! #PatientsHavePower #RightToTry https://t.co/usudNh9Gxo |
| Frank R. @SarcoidosisofLI #PatientsHavePower Why should someone in a suit who doesn't know me should decide whether or not I should die? I know my body better than anyone else. I also am well informed about both sides. Unfortunately I have dealt with the past system. |
| M&B Sciences @mbsciencesinc RT @K_SalemOaks: A2: A2: In reality, the decision still remains with the sponsor company. They know more about the experimental compound than anyone. They carry the risk despite Sec. 561b.b and c.1. FDA is not the bottleneck. #PatientsHavePower #RightToTry |
| Heather McCullen @H_SalemOaks A2: Patients need access to unbiased advice about their options and the realistic chance of success or additional harm. Terminally ill people cannot be treated as immune to harm just because "they're dying anyway" #PatientsHavePower |
| AutonomicRN© @AutonomicRN @K_SalemOaks Great point, have dosages even been established yet? #PatientsHavePower #righttotry |
| @FacingOurRisk @FacingOurRisk @SarcoidosisofLI The people at the drug companies wear suits to. At least the FDA has your best interest in mind. #patientshavepower |
| M&B Sciences @mbsciencesinc Q3: What are your thoughts on the opponent’s argument for #RightToTry? #PatientsHavePower https://t.co/cmgxcihIT7 |
| @FacingOurRisk @FacingOurRisk @AutonomicRN @K_SalemOaks No, dosages are not determined yet in Phase 1 trials. #patientshavepower #RightToTry |
| AutonomicRN© @AutonomicRN You are 200% correct; we know our bodies better than anyone else. If I was sitting in your shoes right now, I would be jumping at any opportunity. The system so many times feels like it is completely against us. #PatientsHavePower #RightToTry https://t.co/Ar07iq70R8 |
| Christina Lizaso @btrfly12 RT @H_SalemOaks: A2: A2: Patients need access to unbiased advice about their options and the realistic chance of success or additional harm. Terminally ill people cannot be treated as immune to harm just because "they're dying anyway" #PatientsHavePower |
| aaron jun @aaronjun_ A3 I'm opposed to #RightToTry so it's not surprising that I agree. American patients already hold an unfair share of the burden of #healthcare. I don't see the benefit of handing them even more of the weight. #PatientsHavePower https://t.co/rJeNzjeFfC |
| @FacingOurRisk @FacingOurRisk Q3: RTT law is unneeded. The FDA program has a 99.4% approval rate. #patientshavepower #RightToTry |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @Clara_Health: Q3: Q3: What are your thoughts on the opponent’s argument for #RightToTry? #PatientsHavePower https://t.co/cmgxcihIT7 |
| Frank R. @SarcoidosisofLI @Clara_Health I believe that the patient needs or caregiver needs to be totally informed in the negatives as well as the positives and make sure with the right specialist to make the right decisions. I am going to die. I would rather have the chance to fighting. #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @AutonomicRN: That is something that so many patients, families and even medical population don't know and is so important! #PatientsHavePower #RightToTry https://t.co/usudNh9Gxo |
| Kelby 🍑 @PeachyPains A3: When you are on your death bed, what wouldn't you do? Especially if the FDA says that a drug is safe enough to be used in trials on humans, then it's safe enough for a dying person to make their own choice about whether or not they would like to try it. #patientshavepower |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: The RTT law doesn’t require drug manufacturers to provide access to unapproved drugs. #patientshavepower #RightToTry |
| M&B Sciences @mbsciencesinc RT @SarcoidosisofLI: @Clara_Health I believe that the patient needs or caregiver needs to be totally informed in the negatives as well as the positives and make sure with the right specialist to make the right decisions. I am going to die. I would rather have the chance to fighting. #PatientsHavePower |
| Kevin Freiert @K_SalemOaks @SarcoidosisofLI So how exactly does the new system help? Have you been able to get the experimental meds you need yet? What steps did you take? I want to hear some success. #PatientsHavePower #RightToTry |
| Heather McCullen @H_SalemOaks A3: Proponents of #RightToTry have created a sense that cures exist, but they're being kept from patients by the government. Now that it has passed, what happens when the cures aren't there? #PatientsHavePower |
| AutonomicRN© @AutonomicRN A3: I'm in agreement with the opponents. However, if a patient or family is going to enter into #righttotry they need to be fully informed regarding ALL aspects. #PatientsHavePower |
| Lisa Davis Budzinski @lisadbudzinski A2 38 states already had the #RightToTry before this proposed federal legislation. Why can't we see the data from those states to have some idea? #PatientsHavePower https://t.co/452vQwbteA |
| AutonomicRN© @AutonomicRN RT @lisadbudzinski: A2 38 states already had the #RightToTry before this proposed federal legislation. Why can't we see the data from those states to have some idea? #PatientsHavePower https://t.co/452vQwbteA |
| Kelby 🍑 @PeachyPains A3: After all, I have the option of adding supplements to my treatment care that aren't FDA approved. It's my choice. #patientshavepower #righttotry |
| Rie Lopez, MPH (she/her) @RieOfLetters I made it! Looking forward to (hopefully) catching up on this important policy discussion! #patientshavepower #RightToTry https://t.co/JvW2a5dtHV |
 | Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy Hola! My name is Brooke! I run #CrazyCreoleMommyChronicles & @IBDMoms. I'm a patient advocate living with #IBD & other autoimmune diseases. A lot of my advocacy work includes mothering w/ a chronic condition & health related legislation. #PatientsHavePower #RightToTry https://t.co/tXNbbCTuJK |
| Lilly Stairs @LillyStairs The financial devastation piece deeply concerns me. Sure, the phrase #RightToTry sounds wonderful but it's all fluff. Yes, you can try the medicine. But how do you afford it? And compassionate use is already in place to allow patients to try with FDA oversight. #PatientsHavePower https://t.co/JXvLLtrpUE |
| Kelby 🍑 @PeachyPains RT @AutonomicRN: A3: A3: I'm in agreement with the opponents. However, if a patient or family is going to enter into #righttotry they need to be fully informed regarding ALL aspects. #PatientsHavePower |
| Heather McCullen @H_SalemOaks A3: #RightToTry only requires that a potential treatment has passed small trials for safety, not efficacy. It also does not address cost. This creates a pathway for entities to sell ineffective treatments. #PatientsHavePower 1/2 |
| AutonomicRN© @AutonomicRN @RieOfLetters Run Forrest Run! #PatientsHavePower #RightToTry Glad to see you!! |
| Kevin Freiert @K_SalemOaks A3: The hope that an experimental compound will work is not false. The falsehood is that this new law will make a difference. BTW - who will track the performance of #S204 requests? Won't that require some administrative work? #PatientsHavePower #RightToTry |
| Heather McCullen @H_SalemOaks A3: Through the debate it's been almost completely ignored that insurance companies are extremely unlikely to cover an treatment obtained through #RighToTry. All cost would likely be out of pocket #PatientsHavePower 2/2 |
| Christina Lizaso @btrfly12 T3: I don't know how much weight I put on the "false hope" concern with the recently passed #RightToTry legislation. I'm more concerned with other things brought up here on this chat. #patientshavepower |
| @FacingOurRisk @FacingOurRisk @PeachyPains Phase 1 trials r different frm Phase 2 or 3. They have less than 30 pts. Not proven safe, effective 4 humans #patientshavepower |
| Kevin Freiert @K_SalemOaks A3: Another false hope is that this will reduce regulations and bureaucracy. Either the FDA or the States will need to implement (i.e. new regs and bureaucracy). @SGottliebFDA thinks it will be FDA https://t.co/9sSf2hUXv9 #PatientsHavePower #RightToTry |
| Heather McCullen @H_SalemOaks I could go down a conspiracy theory path on this one, but I won't. #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @PeachyPains: A3: A3: When you are on your death bed, what wouldn't you do? Especially if the FDA says that a drug is safe enough to be used in trials on humans, then it's safe enough for a dying person to make their own choice about whether or not they would like to try it. #patientshavepower |
| @FacingOurRisk @FacingOurRisk RTT law allows manufacturers who provide investigational drugs (outside FDA program) to charge patients $$$$. #patientshavepower |
| Kelby 🍑 @PeachyPains @FacingOurRisk Yes, but that's what the leading experts are using as their argument in this case. When you are on your death bed, and there are less than 30 pts on trial, they are seeing it as effective enough for humans #patientshavepower |
| Christina Lizaso @btrfly12 RT @PeachyPains: A3: A3: After all, I have the option of adding supplements to my treatment care that aren't FDA approved. It's my choice. #patientshavepower #righttotry |
| Kevin Freiert @K_SalemOaks @SavannaBraun And how does your insurance company look at it? #patientshavepower #RightToTry |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy A1: I like the bill. I think there is a lot of vagueness in the text. But I think it could lead to better control of over treatment by Doctor & Patient. I also think it could open the door to bigger research budgets. More awareness for Trials. #PatientsHavePower #RightsToTry https://t.co/P5TUj6ycUe |
| Lilly Stairs @LillyStairs This couldn't be more true!! Everyone thinks they know what patients want but are they really TALKING to patients?? I want to see policymakers getting patient input. We're smart. And we've had the lived experience. We're qualified to help!! #PatientsHavePower #RightToTry https://t.co/VrgNd9viTK |
| @FacingOurRisk @FacingOurRisk Let’s improve the FDA expanded-access program rather than sidestep it. #patientshavepower |
| M&B Sciences @mbsciencesinc RT @CrzyCreoleMommy: A1: A1: I like the bill. I think there is a lot of vagueness in the text. But I think it could lead to better control of over treatment by Doctor & Patient. I also think it could open the door to bigger research budgets. More awareness for Trials. #PatientsHavePower #RightsToTry https://t.co/P5TUj6ycUe |
| Christina Lizaso @btrfly12 RT @H_SalemOaks: A3: A3: Through the debate it's been almost completely ignored that insurance companies are extremely unlikely to cover an treatment obtained through #RighToTry. All cost would likely be out of pocket #PatientsHavePower 2/2 |
| Rie Lopez, MPH (she/her) @RieOfLetters @H_SalemOaks This is something I worry about, just the emotional fallout. I desperately want cures for my friends, even if I never see one myself. I also worry about further breakdown of our societal functioning if we cannot have some faith in government. #PatientsHavePower #RightToTry |
| Heather McCullen @H_SalemOaks @btrfly12 I'm concerned with the collective false hope, less the individual false hope. If you obtain a treatment through #RightToTry, I don't consider that hope harmful. I'm much more worried about the empty promises it made (saving thousands-millions of lives) #PatientsHavePower |
| @FacingOurRisk @FacingOurRisk The RTT law bypasses the FDA & doesn’t allow data on dosing, efficacy or adverse events to be collected. #patientshavepower #RightToTry |
| Lisa Davis Budzinski @lisadbudzinski Did you know, FDA already has expanded-access policies, sometimes called compassionate use, to give terminally ill patients without other options access to investigational medical products outside of clinical trials. #PatientsHavePower |
| AutonomicRN© @AutonomicRN Let's talk about false hope for a second. Anybody that it terminally ill has had their life, dreams, and everything that goes hanging by a thread. As much as I'm not in favor of #righttotry we still need to keep in mind that #PatientsHavePower and this is their right |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy A2: I feel like there are legitimate arguments on both sides of the coin. I think that often doctors & patients are under crazy restrictions that medically don't make sense. But it could also be a slippery slope. There is always room for error. #PatientsHavePower #RightToTry https://t.co/9GOuZnX2rH |
| Kelby 🍑 @PeachyPains And talking to the patients caregivers. :) #patientshavepower #rightottry https://t.co/CcbFaLE3kg |
| Rie Lopez, MPH (she/her) @RieOfLetters @AutonomicRN You know I lack that running form. LOL! So glad to see you too! #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @LillyStairs: This couldn't be more true!! Everyone thinks they know what patients want but are they really TALKING to patients?? I want to see policymakers getting patient input. We're smart. And we've had the lived experience. We're qualified to help!! #PatientsHavePower #RightToTry https://t.co/VrgNd9viTK |
| Kevin Freiert @K_SalemOaks @PeachyPains Actually, the FDA has not said it is safe to be used in ALL human trials. First trial - one dose per healthy volunteer. Second trial 7-14 doses per healthy person. Most terminally ill patients are looking for more than 2 weeks. #PatientsHavePower #righttotry |
| @FacingOurRisk @FacingOurRisk FDA expanded-access process isn’t perfect but obtaining drugs via RTT may be more burdensome than current FDA system. #patientshavepower |
| AutonomicRN© @AutonomicRN RT @PeachyPains: And talking to the patients caregivers. :) #patientshavepower #rightottry https://t.co/CcbFaLE3kg |
| Kevin Freiert @K_SalemOaks @AutonomicRN A3: The biggest challenge now is to educate patients and physicians about the options available. #PatientsHavePower #RightToTry |
| Rie Lopez, MPH (she/her) @RieOfLetters @PeachyPains Right on!! Caregivers and care partners have valuable insights, too! We cannot forget them in this equation. #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk The RTT law exempts doctors and drug companies from liability for prescribing or providing experimental drugs. #patientshavepower |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @LillyStairs: This couldn't be more true!! Everyone thinks they know what patients want but are they really TALKING to patients?? I want to see policymakers getting patient input. We're smart. And we've had the lived experience. We're qualified to help!! #PatientsHavePower #RightToTry https://t.co/VrgNd9viTK |
| Kelby 🍑 @PeachyPains @K_SalemOaks Agree. Never said the expert was the FDA. There are some stem cell companies using this as a way to get around it. Providing that false hope. #patientshavepower |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy A3: I believe in trying all possibilities. I think that people will find hope and demise in anything and everything. But NOT trying, giving up is the true injustice. I don't like what if's, personally. So, I fall on the, give it a shot, argument. #PatientsHavePower #RightToTry https://t.co/gMRxwbZqMM |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy RT @SarcoidosisofLI: @Clara_Health I believe that the patient needs or caregiver needs to be totally informed in the negatives as well as the positives and make sure with the right specialist to make the right decisions. I am going to die. I would rather have the chance to fighting. #PatientsHavePower |
| AutonomicRN© @AutonomicRN @SarcoidosisofLI Words can't even begin to say what the ache in my heart is for you right now. Know that we are all here for you, I know that isn't a lot right now, but we're here 24/7. #righttotry #PatientsHavePower |
| M&B Sciences @mbsciencesinc Q4: What are some of the other pros/cons that helped shape your decision? #PatientsHavePower #RightToTry https://t.co/i7VnikjwvS |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy @brkthrough_crew @IBDMoms #patientshavepower #righttotry https://t.co/r8YYWdqcfO |
| AutonomicRN© @AutonomicRN @K_SalemOaks I agree, education is a big aspect. It has been for a long time and will always to be. #PatientsHavePower #righttotry |
| @FacingOurRisk @FacingOurRisk A4: RTT law completely bypasses the FDA & doesn’t allow data on dosing, efficacy or adverse events to be collected. #patientshavepower |
| Empowering Patients,LLC • Alison @Empoweringpts9 RT @LillyStairs: This couldn't be more true!! Everyone thinks they know what patients want but are they really TALKING to patients?? I want to see policymakers getting patient input. We're smart. And we've had the lived experience. We're qualified to help!! #PatientsHavePower #RightToTry https://t.co/VrgNd9viTK |
| aaron jun @aaronjun_ A4 Having heard from thousands of patients while working on the @Clara_Health team, I've gotten a close look at what happens when patients are handed huge burdens by a healthcare system designed for companies. It's not equitable. It can be better. #RightToTry #PatientsHavePower https://t.co/cdZWt1grpY |
| Rie Lopez, MPH (she/her) @RieOfLetters If there are exemptions from the liability, this will encourage more to feel safe in trying. However, what if the individual is truly harmed or they die from the experimental drug? Who is liable then? #PatientsHavePower #RightToTry https://t.co/2iDSpzYbOt |
| Heather McCullen @H_SalemOaks @CrzyCreoleMommy That assumes there is something to take a shot on. Proponents and opponents are operating with a different set of facts. #PatientsHavePower |
| Lilly Stairs @LillyStairs RT @aaronjun_: A4 Having heard from thousands of patients while working on the @Clara_Health team, I've gotten a close look at what happens when patients are handed huge burdens by a healthcare system designed for companies. It's not equitable. It can be better. #RightToTry #PatientsHavePower https://t.co/cdZWt1grpY |
| @FacingOurRisk @FacingOurRisk A4: Therapies 4 compassionate use are experimental & not proven safe & effective 4 humans. FDA oversight is crucial. #patientshavepower |
| Kevin Freiert @K_SalemOaks A4: One man's prose is another man's con. Yes, #Goldwaterinstitute has conned the American people. #PatientsHavePower #righttotry https://t.co/hPyOY7yNni |
| Kelby 🍑 @PeachyPains A4: still trying to gather a much information as i can. grateful for this chat and hearing from other patients and caregivers about this. I'm just glad we have that choice and aren't forced onto a drug. #patientshavepower #righttotry |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy A4: The idea that every bill is a fluid piece of legislation that can be amended and scrapped if need be. I also take issue with the stubbornness of the FDA on a few things. That the possibility of patients needs being first is the forefront. #PatientsHavePower #RightToTry https://t.co/701WdVTXLy |
| Heather McCullen @H_SalemOaks A4: The organizations pushing it. Period. #PatientsHavePower |
| Christina Lizaso @btrfly12 RT @Clara_Health: Q4: Q4: What are some of the other pros/cons that helped shape your decision? #PatientsHavePower #RightToTry https://t.co/i7VnikjwvS |
| M&B Sciences @mbsciencesinc RT @CrzyCreoleMommy: A4: A4: The idea that every bill is a fluid piece of legislation that can be amended and scrapped if need be. I also take issue with the stubbornness of the FDA on a few things. That the possibility of patients needs being first is the forefront. #PatientsHavePower #RightToTry https://t.co/701WdVTXLy |
| AutonomicRN© @AutonomicRN A4: I am a patient, but I'm also a nurse and I have used my experiences from caregiving and hospice and critical care. Knowledge, research and remaining neutral to look at both sides. #RightToTry #PatientsHavePower |
| Lisa Davis Budzinski @lisadbudzinski A document regarding pts access to investigational drugs & what to look out for: https://t.co/D4dHM88YVg #PatientsHavePower |
| Kevin Freiert @K_SalemOaks A4: We need to educate patients, physicians, and sponsors about the pros and cons of the existing Compassionate Use and the new right-to-try options. #PatientsHavePower #RightToTry |
| Christina Lizaso @btrfly12 RT @lisadbudzinski: A document regarding pts access to investigational drugs & what to look out for: A document regarding pts access to investigational drugs & what to look out for: https://t.co/D4dHM88YVg #PatientsHavePower |
| Kelby 🍑 @PeachyPains A4: the only thing that i worry about is that it's putting another negative light on clinical trials. #patientshavepower #righttotry |
| Rie Lopez, MPH (she/her) @RieOfLetters @aaronjun_ @Clara_Health Absolutely agree Aaron! Our system is far from equitable. Coming from a #publichealth background, this is something that gnaws at me in the middle of the night. We can be better and we must be better! #RightToTry #PatientsHavePower |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy @H_SalemOaks Like I said before, there is a lot of vagueness in the text. That for me is a problem with this bill. I think that there is room for error like most things. (1) #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk The current regulatory system was established due 2 serious harm & exploitation. FDA review & oversight is critical. #patientshavepower |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @lisadbudzinski: A document regarding pts access to investigational drugs & what to look out for: A document regarding pts access to investigational drugs & what to look out for: https://t.co/D4dHM88YVg #PatientsHavePower |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy @H_SalemOaks However, we do know that there are forms of treatments out there that CAN work...so I’m okay with trying something coming out of phase 1, as opposed to nothing at all. #PatientsHavePower #RightToTry |
| aaron jun @aaronjun_ amen hallelujah #PatientsHavePower #RightToTry https://t.co/C6guLMhjUh |
| AutonomicRN© @AutonomicRN RT @aaronjun_: amen hallelujah #PatientsHavePower #RightToTry https://t.co/C6guLMhjUh |
| Kelby 🍑 @PeachyPains RT @aaronjun_: A4 Having heard from thousands of patients while working on the @Clara_Health team, I've gotten a close look at what happens when patients are handed huge burdens by a healthcare system designed for companies. It's not equitable. It can be better. #RightToTry #PatientsHavePower https://t.co/cdZWt1grpY |
| Kevin Freiert @K_SalemOaks A3: In general, there is a need to increase #healthliteracy, esp. around #drugdevelopment. Completing " a Phase 1 Study" does not mean a compound is safe. It just means we know a little bit more about what adverse effects to look for. #PatientsHavePower #RightToTry https://t.co/58iOxBqAFy |
| aaron jun @aaronjun_ like i mean the money is there all we have to do is change how it's allocated and spent it's not crazy hard #PatientsHavePower #RightToTry |
| M&B Sciences @mbsciencesinc RT @RieOfLetters: @aaronjun_ @Clara_Health Absolutely agree Aaron! Our system is far from equitable. Coming from a #publichealth background, this is something that gnaws at me in the middle of the night. We can be better and we must be better! #RightToTry #PatientsHavePower |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy @H_SalemOaks I also think it’s important to think about the idea that if there are things that do work, the possibilities of raising the budgets of the cdc & nih is there. As well as increasing clinical trial participation. #PatientsHavePower #RightToTry |
| AutonomicRN© @AutonomicRN Listen to this lady! #righttotry #PatientsHavePower https://t.co/cXiust8GoI |
| @FacingOurRisk @FacingOurRisk HCPs have 2 drive access via RTT & FDA expanded access so they are a crucial piece of the puzzle. Disparities exist. #patientshavepower |
| JMK ⭐️🌟 @Jmkilingnyc RT @SarcoidosisofLI: @Clara_Health I believe that the patient needs or caregiver needs to be totally informed in the negatives as well as the positives and make sure with the right specialist to make the right decisions. I am going to die. I would rather have the chance to fighting. #PatientsHavePower |
| M&B Sciences @mbsciencesinc Q5: Whether you agree with #RightToTry or not, do you feel the patient voice played an active role in the development of the legislation? Why or why not? #PatientsHavePower https://t.co/zd8milz737 |
| Christina Lizaso @btrfly12 RT @K_SalemOaks: A3: A3: In general, there is a need to increase #healthliteracy, esp. around #drugdevelopment. Completing " a Phase 1 Study" does not mean a compound is safe. It just means we know a little bit more about what adverse effects to look for. #PatientsHavePower #RightToTry https://t.co/58iOxBqAFy |
| Kevin Freiert @K_SalemOaks A5: There were some obvious examples of patients supporting the effort to push this through. However, it was clear some of these patients were not even aware of the facts about the existing Compassionate Use #PatientsHavePower #RightToTry https://t.co/srd2RnHrsN |
| Heather McCullen @H_SalemOaks A5: Not genuinely. The patient voice was exploited in the form of heartbreaking anecdotes. Proponents of #RightToTry actively deceived patients by not being truthful about their goals. #PatientsHavePower |
| AutonomicRN© @AutonomicRN A5: A small patient voice may have been heard, but the overreaching feel that I get is that there was a need to make a big move to get attention with a piece of legislation that was going to create waves. #PatientsHavePower #righttotry |
| @FacingOurRisk @FacingOurRisk A5: Patients & politics played a part in RTT. Some are not well-versed in existing options & need for oversight. #patientshavepower |
| Frank R. @SarcoidosisofLI #PatientsHavePower Don't get me wrong I don't want a pity party. I want people to understand what I and others have gone through. I wouldn't wish this on anyone else. Imagine my wife and 15 yr old daughter has to go through knowing the government didn't give me a chance. |
| Christina Lizaso @btrfly12 RT @Clara_Health: Q5: Q5: Whether you agree with #RightToTry or not, do you feel the patient voice played an active role in the development of the legislation? Why or why not? #PatientsHavePower https://t.co/zd8milz737 |
| AutonomicRN© @AutonomicRN RT @SarcoidosisofLI: #PatientsHavePower Don't get me wrong I don't want a pity party. I want people to understand what I and others have gone through. I wouldn't wish this on anyone else. Imagine my wife and 15 yr old daughter has to go through knowing the government didn't give me a chance. |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy So what this sounds like is another opportunity for advocates to take legislation and find ways to empower patients with education. No bill created by imperfect humans will be perfect, but they can be building blocks for a good future. #PatientsHavePower #RightToTry https://t.co/AjmSVsT8Ch |
| aaron jun @aaronjun_ A5 I don't think patients had much of a seat at the table, judging by who pumped money into the drafting of the legislation. Call me a cynic but the same folks who tried hard to gut the ACA aren't the ones I trust with this. #RightToTry #PatientsHavePower https://t.co/OI2MRLpsDI |
| M&B Sciences @mbsciencesinc RT @K_SalemOaks: A5: A5: There were some obvious examples of patients supporting the effort to push this through. However, it was clear some of these patients were not even aware of the facts about the existing Compassionate Use #PatientsHavePower #RightToTry https://t.co/srd2RnHrsN |
| Lilly Stairs @LillyStairs A5: No...what else is new?! For starters, 40 notable patient advocacy organizations opposed #RightToTry. I have concerns that the patient voice was not included in any way shape or form. #PatientsHavePower https://t.co/h3shNfgEeE https://t.co/qIj6jdXDlN |
| Kelby 🍑 @PeachyPains A5: The ability to open it up in states where it's not available is at least a step forward for the PT. However limit/completely restrict future access of the drug to the general population because of bad press could scare off eligible patients from enrolling. #patientshavepower |
| aaron jun @aaronjun_ hurts to admit that I agree with @LillyStairs on this #RightToTry #PatientsHavePower https://t.co/SdRmHl53yX |
| AutonomicRN© @AutonomicRN RT @LillyStairs: A5: A5: No...what else is new?! For starters, 40 notable patient advocacy organizations opposed #RightToTry. I have concerns that the patient voice was not included in any way shape or form. #PatientsHavePower https://t.co/h3shNfgEeE https://t.co/qIj6jdXDlN |
| M&B Sciences @mbsciencesinc 40 is a big number #RightToTry #PatientsHavePower https://t.co/z5OlU2e4W9 |
| Kelby 🍑 @PeachyPains RT @LillyStairs: A5: A5: No...what else is new?! For starters, 40 notable patient advocacy organizations opposed #RightToTry. I have concerns that the patient voice was not included in any way shape or form. #PatientsHavePower https://t.co/h3shNfgEeE https://t.co/qIj6jdXDlN |
| @FacingOurRisk @FacingOurRisk @PeachyPains FDA expanded access is available nationwide. It has a a 99.4% approval rate and helps ensure safety. #patientshavepower |
| M&B Sciences @mbsciencesinc That's so cool to hear, Frank! Did you feel that you had the time and platform to make your case when you spoke to them? #RightToTry #PatientsHavePower https://t.co/OsRjIhzrvZ |
| Christina Lizaso @btrfly12 RT @PeachyPains: A5: A5: The ability to open it up in states where it's not available is at least a step forward for the PT. However limit/completely restrict future access of the drug to the general population because of bad press could scare off eligible patients from enrolling. #patientshavepower |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy A5: Yes. The transcripts from patient testimony on healthcare over the years have helped think tanks. Do I think it led to the passing of the legislation? meh...not really. But I think it's another tool in the health lobbyist's arsenal. #RightToTry #PatientsHavePower https://t.co/QcTAEn1ZUV |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy RT @K_SalemOaks: A5: A5: There were some obvious examples of patients supporting the effort to push this through. However, it was clear some of these patients were not even aware of the facts about the existing Compassionate Use #PatientsHavePower #RightToTry https://t.co/srd2RnHrsN |
| Rie Lopez, MPH (she/her) @RieOfLetters @aaronjun_ It should be easier than it is, but we all have different ideas how to fix the system. It is SO very complex. I was in grad school during the ACA and we would fight over this very thing. Even with the same data, it can be interpreted differently. #PatientsHavePower |
| Christina Lizaso @btrfly12 @LillyStairs And getting everyone together on the same page for those things isn't easy - so that 40 were in agreement and collaborated does say something to me. #patientshavepower #RightToTry |
| Kevin Freiert @K_SalemOaks A5: This is a moot point. The real question is how are patients going to be heard now? We need to help patients understand their choices and their ability to influence the repercussions of this legislation #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk @RieOfLetters @aaronjun_Agreed. Let’s improve the FDA expanded-access program rather than sidestep it. #patientshavepower #RightToTry |
| aaron jun @aaronjun_ Totally. I have some pretty aggressive views on this topic, but the system is wound in so many different ways around so many different things that it's hard to reengineer what we have. But I do believe we need to think big and push hard for change. #PatientsHavePower https://t.co/8QpMCNVyGj |
| Lisa Davis Budzinski @lisadbudzinski "No one can guarantee that a particular treatment will be effective" Most of us #chronicillness pts have tried multiple meds that are very dangerous even on the pharmacy shelves #PatientsHavePower |
| AutonomicRN© @AutonomicRN It takes a LOT to get a large number or organizations to all agree on one thing. This is something that should carry some weight. I have gotten a slew of emails from many of the organizations that are against #RightToTry #PatientsHavePower and I tend to agree with them. https://t.co/jp6i87UVii |
| M&B Sciences @mbsciencesinc Closing Thoughts: Did you learn something new? Has your position on #RightToTry evolved? #PatientsHavePower https://t.co/eHEH3wMKsN |
| Kelby 🍑 @PeachyPains RT @K_SalemOaks: A5: A5: This is a moot point. The real question is how are patients going to be heard now? We need to help patients understand their choices and their ability to influence the repercussions of this legislation #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk FORCE was 1 of the many groups (40+) opposed to the legislation. We want patients 2 have access but believe in oversight. #patientshavepower |
| Lisa Davis Budzinski @lisadbudzinski @SarcoidosisofLI @Clara_Health 👏👏👏👏 this is wonderful!!! Very proud of you #PatientsHavePower |
| AutonomicRN© @AutonomicRN Absolutely, we already are using many meds for off-label needs. #PatientsHavePower #righttotry https://t.co/n6JNLqqrOr |
| Christina Lizaso @btrfly12 RT @Clara_Health: Closing Thoughts: Closing Thoughts: Did you learn something new? Has your position on #RightToTry evolved? #PatientsHavePower https://t.co/eHEH3wMKsN |
| Kevin Freiert @K_SalemOaks CT: My thinking has evolved. I was/am still opposed but RTT is now law. The real important work now is to help patients understand their options to get the medicines and even experimental compounds they need. #PatientsHavePower #RightToTry https://t.co/6zSZAOq14z |
 | Janet 🌟 @downtowin RT @SarcoidosisofLI: #PatientsHavePower Don't get me wrong I don't want a pity party. I want people to understand what I and others have gone through. I wouldn't wish this on anyone else. Imagine my wife and 15 yr old daughter has to go through knowing the government didn't give me a chance. |
| Lilly Stairs @LillyStairs CT: Wow! What a chat. Loved hearing everyone's thoughts on #RightToTry! Looking forward to sharing your contributions in a #PatientsHavePower Podcast on this launching next week. Thanks to all you incredible patient advocates for sharing!! |
| aaron jun @aaronjun_ CT Seems like there's a lot of energy for expanded access to treatment. I think there's a ton of stuff patients can advocate for in local and national politics to make healthcare more patient-centric. #PatientsHavePower #RightToTry https://t.co/rzPwv0Ir12 |
| Frank R. @SarcoidosisofLI #PatientsHavePower There are 2 drugs in Europe that have had an over 80% and 77% efficiency on patients, that the FDA wouldn't even approve for me at the time. So I am a little jaded too. |
 | Sol Chen @_solchen RT @RieOfLetters: @aaronjun_ @Clara_Health Absolutely agree Aaron! Our system is far from equitable. Coming from a #publichealth background, this is something that gnaws at me in the middle of the night. We can be better and we must be better! #RightToTry #PatientsHavePower |
| AutonomicRN© @AutonomicRN CT: The scales have finished tipping. Opposed all the way. The vote is in. Thank you @Clara_Health for doing such a timely chat on this hot button issue. As always, it's been a pleasure being with everyone! #PatientsHavePower #RightToTry |
| Rie Lopez, MPH (she/her) @RieOfLetters I feel I will approve of these pretty aggressive views on this topic. We must chat some time very soon. I get so excited when I have someone to talk to/shout at about #publichealth #PatientsHavePower #aaroniscool https://t.co/Uru5mcUB0N |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy I learned a few new things. No, my position hasn't really changed. But that's because I believe the bill will change and evolve. I'm pretty optimistic about this one for some reason! LOL! #PatientsHavePower #RightToTry https://t.co/M31EifvQXA |
| aaron jun @aaronjun_ So I think patients should vote! Run for office, if they can! Go phone bank for the politicians who represent their views! If we don't speak up, someone else will. And that someone usually has their own interests - and wallet - at heart. #PatientsHavePower #RightToTry |
| @FacingOurRisk @FacingOurRisk Yes. Now let's strive 4 safe, effective, affordable drugs that don't drive people to medical bankruptcy. @jameshamblin #patientshavepower |
| Lilly Stairs @LillyStairs CT: Wow! What a chat. Loved hearing everyone's thoughts on #RightToTry! Looking forward to sharing your contributions in a #PatientsHavePower Podcast with @aaronjun_ on this launching next week. Thanks to all you incredible patient advocates for sharing!! |
| Kelby 🍑 @PeachyPains RT @SarcoidosisofLI: #PatientsHavePower There are 2 drugs in Europe that have had an over 80% and 77% efficiency on patients, that the FDA wouldn't even approve for me at the time. So I am a little jaded too. |
| M&B Sciences @mbsciencesinc RT @CrzyCreoleMommy: I learned a few new things. No, my position hasn't really changed. But that's because I believe the bill will change and evolve. I'm pretty optimistic about this one for some reason! LOL! #PatientsHavePower #RightToTry https://t.co/M31EifvQXA |
| M&B Sciences @mbsciencesinc Nothing wrong with hoping for the best and working to help get us all there! #RightToTry #PatientsHavePower https://t.co/0qpUzhHFT4 |
| Lisa Davis Budzinski @lisadbudzinski CT: Please take a moment to read, research both sides to any argument. It's very hard to understand the complete despair it takes to want to try something unknown if you've never been in such a position ✨#PatientsHavePower https://t.co/IZhvmCGve4 |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy RT @Clara_Health: Nothing wrong with hoping for the best and working to help get us all there! #RightToTry #PatientsHavePower https://t.co/0qpUzhHFT4 |
| Kevin Freiert @K_SalemOaks Nicely done. I'd love to talk to you about this IRL. Tweetchats don't allow us to go deep enough. #PatientsHavePower #RightToTry https://t.co/wIyb7PujS7 |
| @FacingOurRisk @FacingOurRisk Parting thought... clinical trials are so important. Please consider participation if possible! #patientshavepower #RightToTry |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy @Clara_Health You can’t move forward without hope. ☺️ #PatientsHavePower #RightToTry |
| Kelby 🍑 @PeachyPains CT: That the patient and caregiver thoughts should be at the forefront of healthcare topics and are often neglected/ignored. It's one of hte reasons why i signed up with @brkthrough_crew. Cut the stigma of clinical trials. :) #patientshavepower |
| Lilly Stairs @LillyStairs RT @FacingOurRisk: Parting thought... clinical trials are so important. Please consider participation if possible! #patientshavepower #RightToTry |
| Kelby 🍑 @PeachyPains Agree! It was so nice participating in an engaging respectful discussion. Especially online! :) #patientshavepower https://t.co/TL528QrNXQ |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy RT @aaronjun_: So I think patients should vote! Run for office, if they can! Go phone bank for the politicians who represent their views! If we don't speak up, someone else will. And that someone usually has their own interests - and wallet - at heart. #PatientsHavePower #RightToTry |
| M&B Sciences @mbsciencesinc @LillyStairs and @aaronjun_ will be chatting about #RightToTry during the next Monday on the #PatientsHavePower pod! If you have thoughts or questions you'd like addressed, send em in! #PatientsHavePower #PatientsHavePod |
| Christina Lizaso @btrfly12 RT @FacingOurRisk: Parting thought... clinical trials are so important. Please consider participation if possible! #patientshavepower #RightToTry |
| Kevin Freiert @K_SalemOaks Compassionate Use is still there and I predict will be the pathway most sponsor companies will choose. #PatientsHavePower #RightToTry https://t.co/uNXcJGVdPi |
| Christina Lizaso @btrfly12 RT @PeachyPains: CT: CT: That the patient and caregiver thoughts should be at the forefront of healthcare topics and are often neglected/ignored. It's one of hte reasons why i signed up with @brkthrough_crew. Cut the stigma of clinical trials. :) #patientshavepower |
| Kevin Freiert @K_SalemOaks CT: We need to put the debate behind us and push forward for patients, with patients. #PatientsHavePower #RightToTry #feelingfullyventednow |
| Brooke Abbott aka The Crazy Creole Mommy @CrzyCreoleMommy RT @lisadbudzinski: CT: CT: Please take a moment to read, research both sides to any argument. It's very hard to understand the complete despair it takes to want to try something unknown if you've never been in such a position ✨#PatientsHavePower https://t.co/IZhvmCGve4 |
| Rie Lopez, MPH (she/her) @RieOfLetters CT: I am a #publichealth policy wonk and this was an awesome chat! It is wonderful to have @Clara_Health and the @brkthrough_crew highlighting these issues. There is so much emotion on both sides and we can all learn from each other. #RightToTry #patientshavepower |
| Heather McCullen @H_SalemOaks Excellent chat. We need resources to teach patients how to use #RightToTry and other options. We also need to focus on educating BEFORE the vote next time a healthcare topic comes up. #PatientsHavePower |
| Lisa Davis Budzinski @lisadbudzinski I so agree! It grinds my gears that those who have never been a patient deciding chronic illness choices. It doesn't make sense : ) Even when Drs get appointed to positions & they have lost touch with middle America #PatientsHavePower https://t.co/goIDtAVGqi |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @Clara_Health: @LillyStairs and @aaronjun_ will be chatting about #RightToTry during the next Monday on the #PatientsHavePower pod! If you have thoughts or questions you'd like addressed, send em in! #PatientsHavePower #PatientsHavePod |
| Lisa Davis Budzinski @lisadbudzinski @AutonomicRN Exactly. It’s wonderful to find other conditions that were never known #PatientsHavePower |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @H_SalemOaks: Excellent chat. We need resources to teach patients how to use #RightToTry and other options. We also need to focus on educating BEFORE the vote next time a healthcare topic comes up. #PatientsHavePower |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @lisadbudzinski: I so agree! It grinds my gears that those who have never been a patient deciding chronic illness choices. It doesn't make sense : ) Even when Drs get appointed to positions & they have lost touch with middle America #PatientsHavePower https://t.co/goIDtAVGqi |
| Lilly Stairs @LillyStairs RT @Clara_Health: @LillyStairs and @aaronjun_ will be chatting about #RightToTry during the next Monday on the #PatientsHavePower pod! If you have thoughts or questions you'd like addressed, send em in! #PatientsHavePower #PatientsHavePod |
| AutonomicRN© @AutonomicRN Actually am headed to DC in a couple weeks for unite@thehill and will be speaking to representatives! This is probably going to be something that I bring up! #righttotry #PatientsHavePower |
| Rie Lopez, MPH (she/her) @RieOfLetters @lisadbudzinski I am sitting here with a migraine and my 'I am still well, right?' brain is like--"Hey! Lets run for office!" LOL!#PatientsHavePower #RightToTry #UncaffeinatedRie |
| Lisa Davis Budzinski @lisadbudzinski @RieOfLetters I know right?! 😄👏👏👏 Heck Yeah #PatientsHavePower |
| Rie Lopez, MPH (she/her) @RieOfLetters @lisadbudzinski @AutonomicRN Yes! And we are all so different, that not everything will work for us the way it is intended. I am so excited for a time when they can figure that out before we start taking (So says the gal who had three med changes in two weeks due to side effects). #PatientsHavePower |
| Rie Lopez, MPH (she/her) @RieOfLetters @SarcoidosisofLI This is what breaks my heart. I know that we have discussed this many times before, Frank, and that is what makes this all so very difficult and emotionally charged for me. I think of you and your family all the time. Not with pity, but with caring. #PatientsHavePower |
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