PatientView | 来自患者组织的美国洞察：定价谈判桌上的一席之地

患者群体目标

以下百分比突出显示了91个患者群体如何与监管机构互动并倡导患者利益。由于受访者可能在多个领域有所代表，百分比总和可能不等于100%。

互动

患者群体如何与药品监管机构互动

了解目标的含义

32 提及

17 提及

15 提及

11 提及

5 提及

1 提及

行动与倡导

患者群体如何获得药物

了解目标的含义

27 提及

22 提及

3 提及

2 提及

英文文本	治疗领域	类别	已触达患者	地理覆盖范围	监管参与	受访者
Our community members participate in this at an individual level, and as an organisation, we meet with industry policy holders.	癌症 > 癌症：女性	监管合作伙伴关系 > 与监管机构合作	10,000	International	Rarely	119028011659
We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 与监管机构合作	100,000	National	Rarely	119039458452
We engage in education, guidance, and institutional dialogue initiatives to promote informed, equitable decisions that place community well-being at their centre.	患者权益倡导 > 训练	监管合作伙伴关系 > 与监管机构合作	100,000	International	Regularly	119063146174
Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed.	癌症 > 癌症：肉瘤	监管合作伙伴关系 > 与监管机构合作	10,000	International	Sometimes	119064713792
Just recently hosted an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting and attended FDA [Food and Drug Administration] meetings with industry partners.	稀有 > 罕见病：遗传性	监管合作伙伴关系 > 与监管机构合作	5,000	International	Regularly	119065526277
... We work closely with the FDA and other drug agencies, like EMA [European Medicines Agency] and PDMA [Pharmaceuticals and Medical Devices Agency], to look at endpoints for drug trials, or how to improve drug trials to benefit sponsors and patients.	肾脏 > 肾脏疾病	监管合作伙伴关系 > 与监管机构合作	100,000	National	Regularly	119070696943
Participation in activities like PDUFA [Prescription Drug User Fee Act] and MDUFA [Medical Device User Fee and Modernization Act] discussions.	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 与监管机构合作	100,000	National	Rarely	119078556821
We have a policy committee and weigh in on public policy issues through education and advocacy.	慢性 > 姑息治疗	监管合作伙伴关系 > 与监管机构合作	100	National	Regularly	119078649119
Discussions about review and approvals of new screening technologies.	癌症 > 癌症：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	100,000	National	Rarely	119045117950
Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations.	患者权益倡导 > 训练	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	100,000	International	Regularly	119063146174
... Our government relations team responds to comment letters and regularly talks with CMS [Centers for Medicare & Medicaid Services] to ensure best outcomes.	肾脏 > 肾脏疾病	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	100,000	National	Regularly	119070696943
Our organization has participated in responses to ICER [Institute for Clinical and Economic Review].	呼吸系统 > 肺部疾病	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	100,000	International	Rarely	119078556838
We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews.	风湿性 > 狼疮	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	100,000	National	Regularly	119082751826
Testifying on behalf of pharma & device companies in front of the FDA [Food and Drug Administration].	移植 > 移植：心脏和肺	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	5,000	Local	Regularly	119014633092
Discussions with FDA [Food and Drug Administration].	总体健康 > 多元化社区	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	10,000	International	Rarely	119026771169
I personally have testified before the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services].	移植 > 移植：心脏和肺	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	1,000	Regional	Sometimes	119037216727
We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025.	神经系统 > 多发性硬化症	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	National	Rarely	119039458452
Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences.	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	5,000	National	Sometimes	119046591776
Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions.	癌症 > 癌症：其他	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	International	Regularly	119047535935
Communications with FDA [Food and Drug Administration], participating in public comment sessions.	血液 > 贫血	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	5,000	National	Regularly	119050770645
We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients.	肝脏 > 肝脏疾病：大多数类型	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	International	Regularly	119054948119
Testifying at ODAC [Oncologic Drugs Advisory Committee].	癌症 > 癌症：其他	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	International	Sometimes	119059387919
Just recently hosted an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting and attended FDA [Food and Drug Administration] meetings with industry partners.	稀有 > 罕见病：遗传性	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	5,000	International	Regularly	119065526277
EL-PFDD [Externally-Led Patient-Focused Drug Development] FDA [Food and Drug Administration] Patient Listening Sessions.	患者权益倡导 > 健康活动人士	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	10,000	National	Regularly	119066130575
We have testified at FDA [Food and Drug Administration] Adcomms [Advisory Committees] and have helped organise Patient-Focused Drug Development meetings.	神经肌肉 > 神经肌肉疾病：大多数类型	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	National	Sometimes	119068005400
Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration].	风湿性 > 狼疮	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	National	Regularly	119070039917
We have held multiple externally led patient-focused drug development (EL-PFDD [Externally Led Patient-Focused Drug Development]) meetings with the FDA [Food and Drug Administration]. We invite regulators to all our scientific workshops. We educate patients and facilitate meetings with regulators on an ongoing basis.	肾脏 > 肾脏疾病	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	National	Regularly	119070696943
We provide public comment on new drugs to the FDA [Food and Drug Administration].	血液 > 镰状细胞病	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	10,000	Regional	Sometimes	119074242460
Participation in activities like PDUFA [Prescription Drug User Fee Act] and MDUFA [Medical Device User Fee and Modernization Act] discussions.	稀有 > 罕见病：大多数类型	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	100,000	National	Rarely	119078556821
Coalition work.	稀有 > 罕见病：患者权利	监管合作伙伴关系 > 与其他医疗保健倡导者	100,000	National	Sometimes	119050874740
We lead the national coalition EACH [Ensuring Access through Collaborative Health]/PIC [Patient Inclusion Council] coalition, working on government drug affordability reviews.	自身免疫 > 自身免疫：其他	监管合作伙伴关系 > 与其他医疗保健倡导者	100,000	International	Regularly	119071535440
In Arizona and, on occasion, more broadly across the USA, we collaborate with other cancer groups, organisations, and legislators.	癌症 > 癌症：血液	监管合作伙伴关系 > 与其他医疗保健倡导者	Do not know	Regional	Sometimes	119078394447
Lobbying on the state and federal level on rules/laws that impact our patients.	总体健康 > 医疗服务	影响政策和立法 > 影响医疗保健政策和立法	100	National	Sometimes	119011450240
Our Cancer Policy Institute advocates for equitable access to medicines to government organizations such as CMS [Centers for Medicare & Medicaid Services].	癌症 > 癌症：其他	影响政策和立法 > 影响医疗保健政策和立法	100,000	International	Regularly	119020437168
We include a discussion of medication pricing in our conversations with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD [Parkinson's Disease], as maintaining balance as the disease progresses saves both providers and insurers money in the long run.	神经退行性 > 帕金森病	影响政策和立法 > 影响医疗保健政策和立法	100,000	Regional	Rarely	119020536956
Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures.	风湿性 > 狼疮	影响政策和立法 > 影响医疗保健政策和立法	5,000	Regional	Sometimes	119037794627
Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures.	风湿性 > 狼疮	影响政策和立法 > 影响医疗保健政策和立法	5,000	Regional	Sometimes	119037794627
...The organization's flagship event - the annual Indo US Bridging RARE Summit brings together rare disease stakeholders, including scientists, patient advocates, government officials, biopharma executives, and policy experts who share a common goal: transforming the future of care for the 400 million people worldwide living with rare diseases.	稀有 > 罕见病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	100	International	Regularly	119038170136
Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office.	癌症 > 癌症：医学研究	影响政策和立法 > 影响医疗保健政策和立法	1,000	National	Rarely	119044810653
We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients.	肝脏 > 肝脏疾病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	100,000	International	Regularly	119054948119
We frequently engage on state and federal issues related to patient access to care.	呼吸系统 > 肺部疾病	影响政策和立法 > 影响医疗保健政策和立法	100,000	National	Rarely	119055217525
We regularly advocate through sign-on letters, policymaker discussions, and policy related programming.	癌症 > 癌症：多元社区	影响政策和立法 > 影响医疗保健政策和立法	5,000	National	Sometimes	119055664199
We both authored and signed on to letters to state and federal (private insurance and CMS [Centers for Medicare & Medicaid Services]) on a variety of issues.	心血管 > 心血管和心脏疾病	影响政策和立法 > 影响医疗保健政策和立法	Over 100,000	International	Sometimes	119058234393
Campaigning with KidneyCAN for increased federal research funding.	癌症 > 癌症：肾脏	影响政策和立法 > 影响医疗保健政策和立法	1,000	Regional	Sometimes	119059282158
The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies.	肝脏 > 肝脏疾病：大多数类型	影响政策和立法 > 影响医疗保健政策和立法	100,000	National	Regularly	119059491202
We communicate with federal representatives about the importance of funding.	癌症 > 癌症：脑	影响政策和立法 > 影响医疗保健政策和立法	We do not communicate with patients directly	National	Sometimes	119061001133
We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years].	患者权益倡导 > 健康活动人士	影响政策和立法 > 影响医疗保健政策和立法	Do not know	National	Regularly	119065430409
Just one example: we continually advocate (both through regulatory comments and now legislation) for adequate reimbursement for new and innovative drugs in the ESRD [End-Stage Renal Disease] space through TDAPA [Transitional Drug Add-on Payment Adjustment] and a sustainable post-TDAPA payment pathway.	肾脏 > 肾脏疾病	影响政策和立法 > 影响医疗保健政策和立法	Over 100,000	National	Regularly	119068073151
We work with state, federal policymakers and health insurers.	总体健康 > 肥胖症	影响政策和立法 > 影响医疗保健政策和立法	Over 100,000	National	Sometimes	119068989651
As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity.	HIV > HIV与性健康	影响政策和立法 > 影响医疗保健政策和立法	100	Regional	Regularly	119073874628
Supported efforts to have an ICD-10 (International Classification of Diseases, 10th Revision) code for VEXAS syndrome.	稀有 > 自身炎症性疾病	影响政策和立法 > 影响医疗保健政策和立法	1,000	International	Sometimes	119074154009
We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services.	血液 > 镰状细胞病	影响政策和立法 > 影响医疗保健政策和立法	10,000	Regional	Sometimes	119074242460
Testifying at PDAB meetings [submitting comments to a Patient Drug Affordability Board during a public meeting, hearing, or review process] writing letters to decision-makers at state and federal level [USA].	稀有 > 囊性纤维化	影响政策和立法 > 影响医疗保健政策和立法	10,000	National	Sometimes	119078388026
In Arizona and occasionally, the U.S., we collaborate with other cancer groups, organizations, and legislators who support legislation that will help cancer research, the medical/oncology groups, and cancer patients and families.	癌症 > 癌症：血液	影响政策和立法 > 影响医疗保健政策和立法	Do not know	Regional	Sometimes	119078394447
We have a policy committee and weigh in on public policy issues through education and advocacy.	慢性 > 姑息治疗	影响政策和立法 > 影响医疗保健政策和立法	100	National	Regularly	119078649119
We include a discussion of medication pricing in our discussions with state and federal government employees.	神经退行性 > 帕金森病	影响政策和立法 > 参与公众听证会和咨询	100,000	Regional	Rarely	119020536956
We submitted comments to CMS [Centers for Medicare & Medicaid Services] regarding the price negotiation of mental health and neurological conditions.	心理健康 > 心理健康：污名化	影响政策和立法 > 参与公众听证会和咨询	We do not communicate with patients directly	National	Sometimes	119024698241
IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community.	稀有 > 罕见病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	100	International	Regularly	119038170136
Testify before prescription drug affordability boards.	出血 > 出血性疾病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	1,000	Local	Regularly	119044404340
Communications with FDA [Food and Drug Administration], participating in public comment sessions.	血液 > 贫血	影响政策和立法 > 参与公众听证会和咨询	5,000	National	Regularly	119050770645
We regularly advocate through sign-on letters, policymaker discussions, and policy related programming.	癌症 > 癌症：多元社区	影响政策和立法 > 参与公众听证会和咨询	5,000	National	Sometimes	119055664199
We both authored and signed on to letters to state and federal (private insurance and CMS [Centers for Medicare & Medicaid Services]) on a variety of issues.	心血管 > 心血管和心脏疾病	影响政策和立法 > 参与公众听证会和咨询	Over 100,000	International	Sometimes	119058234393
... Testifying at IRA [Inflation Reduction Act] listening sessions to elevate the patient experience.	癌症 > 癌症：其他	影响政策和立法 > 参与公众听证会和咨询	100,000	International	Sometimes	119059387919
The Community Liver Alliance engages at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. The Community Liver Alliance's advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases.	肝脏 > 肝脏疾病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	100,000	National	Regularly	119059491202
Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed.	癌症 > 癌症：肉瘤	影响政策和立法 > 参与公众听证会和咨询	10,000	International	Sometimes	119064713792
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多数类型	影响政策和立法 > 参与公众听证会和咨询	5,000	Regional	Regularly	119069774462
... Our government relations team responds to comment letters and regularly talks with CMS [Centers for Medicare & Medicaid Services] to ensure best outcomes.	肾脏 > 肾脏疾病	影响政策和立法 > 参与公众听证会和咨询	100,000	National	Regularly	119070696943
We provided comments to federal and state regulators around drug pricing in the 340B program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics] when asking for community input to proposed policy changes.	患者教育 > 患者信息	影响政策和立法 > 参与公众听证会和咨询	5,000	National	Sometimes	119073380443
We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. We host roundtables and advocacy awareness days with legislators where we raise awareness of current problems and offer solutions. One recent event was with the Governor of Virginia. We are planning a Spine Health Fair at the US Capitol in September.	总体健康 > 生活方式	影响政策和立法 > 参与公众听证会和咨询	100,000	National	Sometimes	119074217249
We provide public comment on new drugs to the FDA [Food and Drug Administration].	血液 > 镰状细胞病	影响政策和立法 > 参与公众听证会和咨询	10,000	Regional	Sometimes	119074242460
Work with NYSTAG [New York State Technical Advisory Group-generally refers to ad-hoc or specialised panels of industry experts, academics, and stakeholders assembled by NY state agencies to advise on specific policies, healthcare, or emerging technologies.].	总体健康 > 医疗服务	影响政策和立法 > 参与公众听证会和咨询	5,000	Regional	Sometimes	119078326039
Testifying at PDAB meetings [submitting comments to a Patient Drug Affordability Board during a public meeting, hearing, or review process] writing letters to decision-makers at state and federal level [USA].	稀有 > 囊性纤维化	影响政策和立法 > 参与公众听证会和咨询	10,000	National	Sometimes	119078388026
IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community.	稀有 > 罕见病：大多数类型	影响政策和立法 > 动员议员和政治领导人	100	International	Regularly	119038170136
Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office.	癌症 > 癌症：医学研究	影响政策和立法 > 动员议员和政治领导人	1,000	National	Rarely	119044810653
We communicate with federal representatives about the importance of funding.	癌症 > 癌症：脑	影响政策和立法 > 动员议员和政治领导人	We do not communicate with patients directly	National	Sometimes	119061001133
We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services.	血液 > 镰状细胞病	影响政策和立法 > 动员议员和政治领导人	10,000	Regional	Sometimes	119074242460
... We are active in Lupus Caucus [Congressional Lupus Caucus, a bipartisan group of lawmakers focused on raising awareness about lupus and securing federal funding for research and education]	风湿性 > 狼疮	影响政策和立法 > 动员议员和政治领导人	100,000	National	Regularly	119082751826
Government Relations/Advocacy team signs letters in support of lower drug prices.	癌症 > 癌症：前列腺	定价与可负担性倡导 > 倡导公平的药品定价	100,000	National	Sometimes	119011723588
We include a discussion of medication pricing in our discussions with state and federal government employees.	神经退行性 > 帕金森病	定价与可负担性倡导 > 倡导公平的药品定价	100,000	Regional	Rarely	119020536956
Testify before prescription drug affordability boards.	出血 > 出血性疾病：大多数类型	定价与可负担性倡导 > 倡导公平的药品定价	1,000	Local	Regularly	119044404340
Drug assistance programs and co-pay assistance foundation.	癌症 > 癌症：大多数类型	定价与可负担性倡导 > 倡导公平的药品定价	5,000	International	Sometimes	119045428228
We frequently engage on state and federal issues related to patient access to care, occasionally weighing in on issues adjacent to drug pricing, though it is not our primary focus.	呼吸系统 > 肺部疾病	定价与可负担性倡导 > 倡导公平的药品定价	100,000	National	Rarely	119055217525
The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies	肝脏 > 肝脏疾病：大多数类型	定价与可负担性倡导 > 倡导公平的药品定价	100,000	National	Regularly	119059491202
Promoting 340B reforms [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics].	患者权益倡导 > 健康活动人士	定价与可负担性倡导 > 倡导公平的药品定价	10,000	Regional	Regularly	119059636045
Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing.	癌症 > 癌症：脑	定价与可负担性倡导 > 倡导公平的药品定价	1,000	National	Rarely	119061176158
Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations.	患者权益倡导 > 训练	定价与可负担性倡导 > 倡导公平的药品定价	100,000	International	Regularly	119063146174
We bring patient perspectives opposing use of QUALYs [quality-adjusted life years] and opposing importing drug prices from other countries [oustide of the USA], especially those that use QALYs.	患者权益倡导 > 健康活动人士	定价与可负担性倡导 > 倡导公平的药品定价	Do not know	National	Regularly	119065430409
Just one example: we continually advocate (both through regulatory comments and now legislation) for adequate reimbursement for new and innovative drugs in the ESRD [End-Stage Renal Disease] space through TDAPA [Transitional Drug Add-on Payment Adjustment] and a sustainable post-TDAPA payment pathway.	肾脏 > 肾脏疾病	定价与可负担性倡导 > 倡导公平的药品定价	Over 100,000	National	Regularly	119068073151
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多数类型	定价与可负担性倡导 > 倡导公平的药品定价	5,000	Regional	Regularly	119069774462
ETSI [Ending Transmission of Sexual Infections] Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications.	HIV > HIV与性健康	定价与可负担性倡导 > 倡导公平的药品定价	100	Regional	Regularly	119073874628
Pharma pricing.	总体健康 > 肥胖症	定价与可负担性倡导 > 倡导公平的药品定价	100,000	National	Regularly	119076659022
With our new Public Policy department, this may come up as an opportunity to advocate for drug pricing.	神经退行性 > 帕金森病	定价与可负担性倡导 > 倡导公平的药品定价	100,000	National	Sometimes	119078318937
Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years.	血液 > 镰状细胞病	定价与可负担性倡导 > 倡导公平的药品定价	5,000	National	Sometimes	119079213376
We have participated in the IRA [Inflation Reduction Act] price negotiation round tables.	呼吸系统 > 哮喘和过敏	定价与可负担性倡导 > 参与价格审查委员会谈判	100,000	National	Regularly	119011501209
We have participated in the IRA [Inflation Reduction Act of 2022] price negotiation round tables [The IRA provides Medicare (the US federal health insurance program for people age 65 and older) powers to negotiate lower prescription costs].	呼吸系统 > 哮喘和过敏	定价与可负担性倡导 > 参与价格审查委员会谈判	100,000	National	Regularly	119011501209
We submitted comments to CMS [Centers for Medicare & Medicaid Services] regarding the price negotiation of mental health and neurological conditions.	心理健康 > 心理健康：污名化	定价与可负担性倡导 > 参与价格审查委员会谈判	We do not communicate with patients directly	National	Sometimes	119024698241
... meetings with state office of CMS [Centers for Medicare & Medicaid Services].	出血 > 出血性疾病：大多数类型	定价与可负担性倡导 > 参与价格审查委员会谈判	1,000	Local	Regularly	119044404340
Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences.	稀有 > 罕见病：大多数类型	定价与可负担性倡导 > 参与价格审查委员会谈判	5,000	National	Sometimes	119046591776
We educate advocates on outreach to Patient Drug Affordability Boards [Patient Drug Affordability Boards are state government boards that review prescription drug prices and, in some US states, can take actions to help make drugs more affordable.]	癌症 > 癌症：多元社区	定价与可负担性倡导 > 参与价格审查委员会谈判	100,000	National	Sometimes	119054172981
The Community Liver Alliance's advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases.	肝脏 > 肝脏疾病：大多数类型	定价与可负担性倡导 > 参与价格审查委员会谈判	100,000	National	Regularly	119059491202
PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees.	患者权益倡导 > 健康活动人士	定价与可负担性倡导 > 参与价格审查委员会谈判	We do not communicate with patients directly	National	Regularly	119064160791
We participated in the Medicare price negotiation roundtables and town hall last year.	呼吸系统 > 哮喘和过敏	定价与可负担性倡导 > 参与价格审查委员会谈判	100,000	National	Regularly	119069847466
Actively participate in patient-focused drug development with the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]/HHS [U.S. Department of Health and Human Services] Prescription Access discussions.	风湿性 > 狼疮	定价与可负担性倡导 > 参与价格审查委员会谈判	100,000	National	Regularly	119070039917
We lead the national coalition EACH [Ensuring Access through Collaborative Health]/PIC [Patient Inclusion Council] coalition, working on government drug affordability reviews.	自身免疫 > 自身免疫：其他	定价与可负担性倡导 > 参与价格审查委员会谈判	100,000	International	Regularly	119071535440
We provided comments to federal and state regulators around drug pricing in the 340B program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics] when asking for community input to proposed policy changes.	患者教育 > 患者信息	定价与可负担性倡导 > 参与价格审查委员会谈判	5,000	National	Sometimes	119073380443
We communicate to them that many HD [Huntington's disease] families are low income as often the one making the money is the one with HD. So cost of meds can impact whether they can afford the meds.	神经退行性 > 亨廷顿病	定价与可负担性倡导 > 解决低收入和弱势群体面临的费用障碍	100,000	National	Sometimes	119017688949
Health insurance companies and health insurance reps organize activities for low income communities.	老年人 > 老年人	定价与可负担性倡导 > 解决低收入和弱势群体面临的费用障碍	Over 100,000	International	Sometimes	119035935608
ETSI [Ending Transmission of Sexual Infections] Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications and healthcare services. Through its participation in programs such as the 340B Drug Pricing Program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics], ETSI works to ensure that low-income and uninsured patients have access to reduced-cost prescription medications, including HIV treatment and prevention medications like PrEP.	HIV > HIV与性健康	定价与可负担性倡导 > 解决低收入和弱势群体面临的费用障碍	100	Regional	Regularly	119073874628
We regularly provide comments to state P&T [Pharmacy and Therapeutics] committees regarding their formulary inclusions and exclusions.	呼吸系统 > 哮喘和过敏	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	100,000	National	Regularly	119011501209
PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees.	患者权益倡导 > 健康活动人士	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	We do not communicate with patients directly	National	Regularly	119064160791
Invitation to the White House in 2024 to discuss cancer research funding with First Lady's office. Lastly, I've co-written op-eds and on the local level recorded a video (ACS) targeting NYS lawmakers and the advocacy for increased equity and access to biomarker testing for patients.	癌症 > 癌症：医学研究	定价与可负担性倡导 > 参与宣传活动	1,000	National	Rarely	119044810653
Advocacy in access to care issues.	癌症 > 癌症：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	10,000	Regional	Sometimes	119011457943
Our Cancer Policy Institute advocates for equitable access to medicines to government organizations such as CMS [Centers for Medicare & Medicaid Services].	癌症 > 癌症：其他	改善访问路径 > 促进公平获取药品/医疗保健	100,000	International	Regularly	119020437168
We include a discussion of medication pricing in our conversations with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD [Parkinson's Disease], as maintaining balance as the disease progresses saves both providers and insurers money in the long run.	神经退行性 > 帕金森病	改善访问路径 > 促进公平获取药品/医疗保健	100,000	Regional	Rarely	119020536956
... We sent letters to States to request that they change their step requirements for access to mental health treatments.	心理健康 > 心理健康：污名化	改善访问路径 > 促进公平获取药品/医疗保健	We do not communicate with patients directly	National	Sometimes	119024698241
Invitation to the White House in 2024 to discuss cancer research funding with First Lady's office. Lastly, I've co-written op-eds and on the local level recorded a video (ACS) targeting NYS lawmakers and the advocacy for increased equity and access to biomarker testing for patients.	癌症 > 癌症：医学研究	改善访问路径 > 促进公平获取药品/医疗保健	1,000	National	Rarely	119044810653
Drug assistance programs and co-pay assistance foundation.	癌症 > 癌症：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	5,000	International	Sometimes	119045428228
We frequently engage on state and federal issues related to patient access to care.	呼吸系统 > 肺部疾病	改善访问路径 > 促进公平获取药品/医疗保健	100,000	National	Rarely	119055217525
The Community Liver Alliance elevates patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies.	肝脏 > 肝脏疾病：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	100,000	National	Regularly	119059491202
We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug.	神经系统 > 偏头痛/其他头痛疾病	改善访问路径 > 促进公平获取药品/医疗保健	100,000	National	Rarely	119060019780
Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations.	患者权益倡导 > 训练	改善访问路径 > 促进公平获取药品/医疗保健	100,000	International	Regularly	119063146174
State level Medicaid.	癌症 > 癌症：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	1,000	National	Rarely	119068136322
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	5,000	Regional	Regularly	119069774462
We are currently addressing access to biologic medications.	稀有 > 罕见病：免疫	改善访问路径 > 促进公平获取药品/医疗保健	10,000	National	Sometimes	119069849386
Actively participate in patient-focused drug development with the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]/HHS [U.S. Department of Health and Human Services] Prescription Access discussions.	风湿性 > 狼疮	改善访问路径 > 促进公平获取药品/医疗保健	100,000	National	Regularly	119070039917
We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options.	总体健康 > 生活方式	改善访问路径 > 促进公平获取药品/医疗保健	100,000	National	Sometimes	119074217249
Pharma pricing, coverage, indications.	总体健康 > 肥胖症	改善访问路径 > 促进公平获取药品/医疗保健	100,000	National	Regularly	119076659022
We have on only a few occasions advocated for better access to newer drugs.	心理健康 > 心理健康：污名化	改善访问路径 > 促进公平获取药品/医疗保健	Over 100,000	International	Rarely	119078209025
Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years.	血液 > 镰状细胞病	改善访问路径 > 促进公平获取药品/医疗保健	5,000	National	Sometimes	119079213376
... convene MAPRx [Medicare Access for Patients Rx] for Medicare Part D, etc.[MAPRx is guided by the idea that every Medicare Part D beneficiary should have timely, affordable access to the medications they need to live a healthy life.]	风湿性 > 狼疮	改善访问路径 > 促进公平获取药品/医疗保健	100,000	National	Regularly	119082751826
... We sent letters to States to request that they change their step requirements for access to mental health treatments.	心理健康 > 心理健康：污名化	改善访问路径 > 解决访问和管理方面的差距	We do not communicate with patients directly	National	Sometimes	119024698241
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多数类型	改善访问路径 > 解决访问和管理方面的差距	5,000	Regional	Regularly	119069774462
IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community.	稀有 > 罕见病：大多数类型	改善访问路径 > 改善罕见/超罕见疗法的获取途径	100	International	Regularly	119038170136
Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions.	癌症 > 癌症：其他	循证患者意见 > 利用患者洞察来指导决策	100,000	International	Regularly	119047535935
Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions.	癌症 > 癌症：其他	循证患者意见 > 利用患者洞察来指导决策	100,000	International	Regularly	119047535935
Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting.	神经退行性 > 痴呆症	循证患者意见 > 利用患者洞察来指导决策	Do not know	National	Sometimes	119052219350
Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207	癌症 > 癌症：乳腺癌	循证患者意见 > 利用患者洞察来指导决策	100,000	International	Sometimes	119052475951
We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years].	患者权益倡导 > 健康活动人士	循证患者意见 > 利用患者洞察来指导决策	Do not know	National	Regularly	119065430409
Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration].	风湿性 > 狼疮	循证患者意见 > 利用患者洞察来指导决策	100,000	National	Regularly	119070039917
We have held multiple externally led patient-focused drug development (EL-PFDD [Externally Led Patient-Focused Drug Development]) meetings with the FDA [Food and Drug Administration].	肾脏 > 肾脏疾病	循证患者意见 > 利用患者洞察来指导决策	100,000	National	Regularly	119070696943
As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity.	HIV > HIV与性健康	循证患者意见 > 利用患者洞察来指导决策	100	Regional	Regularly	119073874628
We provide data and real-world knowledge.	肝脏 > 肝脏疾病：大多数类型	循证患者意见 > 向监管机构提供真实世界证据（RWE）	100,000	National	Sometimes	119045306046
The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies	肝脏 > 肝脏疾病：大多数类型	循证患者意见 > 向监管机构提供真实世界证据（RWE）	100,000	National	Regularly	119059491202
ETSI [Ending Transmission of Sexual Infections] Health Clinic collaborates with pharmacy partners and public health systems to highlight the real-world impact that medication costs have on patients living with HIV and those at risk. By documenting patient barriers to medication access, the clinic helps inform healthcare partners and policymakers about the financial and systemic challenges patients face.	HIV > HIV与性健康	循证患者意见 > 向监管机构提供真实世界证据（RWE）	100	Regional	Regularly	119073874628
We communicate to them that many HD [Huntington's Disease] families are low income, as often the one making the money is the one with HD.	神经退行性 > 亨廷顿病	循证患者意见 > 利用患者故事和亲身经历叙述	100,000	National	Sometimes	119017688949
The Community Liver Alliance engages at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies.	肝脏 > 肝脏疾病：大多数类型	循证患者意见 > 利用患者故事和亲身经历叙述	100,000	National	Regularly	119059491202
We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug.	神经系统 > 偏头痛/其他头痛疾病	循证患者意见 > 利用患者故事和亲身经历叙述	100,000	National	Rarely	119060019780
Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing.	癌症 > 癌症：脑	循证患者意见 > 利用患者故事和亲身经历叙述	1,000	National	Rarely	119061176158
Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting.	神经退行性 > 痴呆症	循证患者意见 > 开展调查/研究以生成数据	Do not know	National	Sometimes	119052219350
Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207	癌症 > 癌症：乳腺癌	循证患者意见 > 开展调查/研究以生成数据	100,000	International	Sometimes	119052475951
As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity.	HIV > HIV与性健康	循证患者意见 > 将证据和洞察转化为政策建议	100	Regional	Regularly	119073874628
... We work closely with the FDA and other drug agencies, like EMA [European Medicines Agency] and PDMA [Pharmaceuticals and Medical Devices Agency], to look at endpoints for drug trials, or how to improve drug trials to benefit sponsors and patients.	肾脏 > 肾脏疾病	诊断与药品配送 > 协作设计临床试验	100,000	National	Regularly	119070696943
Supporting legislation for multiple cancer early detection, including TV appearances and social media.	癌症 > 癌症：照护者、家人、朋友	诊断与药品配送 > 支持筛查和早期检测	1,000	Regional	Regularly	119036085844
Discussions about review and approvals of new screening technologies.	癌症 > 癌症：大多数类型	诊断与药品配送 > 支持筛查和早期检测	100,000	National	Rarely	119045117950
USPTF [U.S. Preventive Services Task Force] input.	癌症 > 癌症：男性	诊断与药品配送 > 支持筛查和早期检测	100,000	National	Sometimes	119050776275
Sit on several panels.	癌症 > 癌症：乳腺癌	机构治理 > 确保在政府咨询机构中的代表性	100	Regional	Regularly	119037236943
... The organization's flagship event - the annual Indo US Bridging RARE Summit brings together rare disease stakeholders, including scientists, patient advocates, government officials, biopharma executives, and policy experts who share a common goal: transforming the future of care for the 400 million people worldwide living with rare diseases.	稀有 > 罕见病：大多数类型	机构治理 > 在多利益相关方网络中高效协作	100	International	Regularly	119038170136
Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207	癌症 > 癌症：乳腺癌	机构治理 > 在多利益相关方网络中高效协作	100,000	International	Sometimes	119052475951
We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. We host roundtables and advocacy awareness days with legislators where we raise awareness of current problems and offer solutions. One recent event was with the Governor of Virginia. We are planning a Spine Health Fair at the US Capitol in September.	总体健康 > 生活方式	机构治理 > 在多利益相关方网络中高效协作	100,000	National	Sometimes	119074217249
We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews, active in Lupus Caucus, convene MAPRx [Medicare Access for Patients Rx] for Medicare Part D, etc.[MAPRx is guided by the idea that every Medicare Part D beneficiary should have timely, affordable access to the medications they need to live a healthy life.]	风湿性 > 狼疮	机构治理 > 在多利益相关方网络中高效协作	100,000	National	Regularly	119082751826

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