Archive for the ‘Healthcare Reform’ category

Access to Immunosuppressive Drugs under Medicare Part D is at Risk — Transplant Community Needs to Act Now!

February 12th, 2014

New: Congressional Briefings on Preserving & Protecting the 6 Protected Classes Scheduled

Feb 12th — Noon: B340 Rayburn House Office Building

Feb 13th — Noon: Capitol Visitors Center Room SVC 200

The blog is cross-posted with permission from the National Kidney Foundation. Other comments are completely my own.

All those you have been transplanted, are waiting for a transplant, love someone who has had a transplant, donated a loved one’s organs to give the gift of life and want to make sure it is not endangered OR just folks who believe that CMS should not engage in the practice of medicine please read and make your opinion known.

Access to Immunosuppressive Drugs under Medicare Part D is at Risk

Medicare beneficiaries who do not qualify for immunosuppressive drug coverage under Medicare Part B (the Medicare program that covers outpatient care) typically receive coverage of their immunosuppressive drugs under the Medicare prescription drug program known as Medicare Part D.  Under current Medicare Part D protections, organ recipients have access to all approved immunosuppressive drugs. This protection allows physicians to tailor drug combinations to best meet the needs of the individual patients. However, a proposal released by the Centers for Medicare & Medicaid Services (CMS) on January 6, 2014 would eliminate this protection and allow Medicare Part D health plans to restrict access to immunosuppressive drugs.

Without the current protections, Part D plans, not doctors, will decide which immunosuppressive drugs patients can access. This proposal reflects a misunderstanding by CMS that immunosuppression to avoid organ rejection is a one-size fits all therapy. Patients and transplant physicians know that there is no one drug combination that works for every patient. Some patients may experience harmful side-effects with a particular drug combination that might work wonderfully for someone else.  It takes a delicate balance to properly suppress the immune system in order to preserve the organ, while minimizing side-effects for each patient.

Rest assured that NKF is engaged on this issue and is educating legislators and the media about flaws in CMS’s proposal. To date, our conversations with congressional offices are encouraging. We are also reaching out to CMS to help them better understand how immunosuppression works and why it is important to cover all immunosuppressive drugs.  However, we still need your help.  Please email and share your story about how your physician was able to find the right combination of medications for you.  Did the first combination of drugs work right away or did you need to try multiple combinations before the right one was found?  Sharing your stories with policymakers helps us grow momentum in order to get CMS to reverse this proposal.

Additional Information:

CMS fact sheet on changes.

CMS proposed rule$File/MAJan62014.pdf

Foley Hoag analysis

Submit comments on!submitComment;D=CMS-2014-0007-0002

Learn more about the Medicare Access for Patients Rx Coalition


Let Patient Safety Guide FTC Decisions on Biosimilar Naming

February 4th, 2014

Today the Federal Trade Commission is conducting an workshop to determine, in part, if follow-on versions of biologic medications will have the same name as the original versions of the medications or if they will be designated by a distinguishable name or code so if there is an adverse event the doctors, patients, and regulatory agencies can track back and find the responsible product.  They would still be on the market, still be (presumably) at a lower cost, but just not able to hide.  What do you think?

Below is a link to my views in a conversation with  former Asst. Commission of FDA, Peter Pitts and a blog post from the Alliance for Patient Access which includes a letter signed my major patient associations.

Drugwonks Interview:

Blog Post from the Alliance for Patient Access

By Brian Kennedy, Alliance for Patient Access

As a representative of an organization that advocates for greater patient access to approved therapies and appropriate clinical care, I am hopeful that when biosimilars are introduced into the U.S. market (later this year or early next), patients nationwide will have increased access to certain life-altering and life-saving treatments. It’s disappointing though that the Federal Trade Commission (FTC) is driving a discussion about market access and competition for biologics and biosimilars this week, yet they left important perspectives – namely patients, providers with experience prescribing biologics, and health system pharmacists – out of that dialogue.
While the U.S. Food and Drug Administration (FDA) – not the FTC – ultimately sets federal policy around the approvals pathway for biosimilars, any public discussion driven by a federal government agency is going to get attention; because of the FTC’s omission of these important perspectives, the Alliance for Patient Access (AfPA), along with the California Healthcare Institute (CHI) and thirteen other health advocacy organizations, signed a letter that has been submitted to the FTC and urges that patient safety and consumer protection be at the forefront of the FTC’s considerations, particularly when discussing the issue of the naming of biosimilar products.
Before approving biosimilars in the U.S., FDA will first need to establish naming policy for these products. Given the vast differences between chemical compounds and biologics – including biosimilars, the FDA should require distinguishable names for all biologic products, rather than requiring biosimilars and their innovator reference product to share the same name.
Patients across the country will be best served if distinguishable names are required for all biologics. By providing clarity of which medication is being recommended at the point of prescription, distinguishable names facilitate the process of determining the cause of an adverse effect and allowing patients and their medical teams route back to the origin of the problem. Issues that may be particular to a specific biological product may even be entirely untraceable without distinguishable names or other distinct identifiers.
Accordingly, through the way it sets naming policy, FDA can provide the best possible protection for patients, while simultaneously ensuring the highest credibility for biosimilars as they enter the marketplace.

Original Post and letter:

FTC Workshop  on Competitive Impacts of State Regulations and Naming Conventions Concerning Follow-on Biologics:


A Patient Summer

September 3rd, 2013

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.”  Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.”

–          2 Corinthians 12:9


I have had an unusual summer, at least for me.  I took time off.  I unburdened myself of most work and all volunteer obligations.  Reset my family expectations of me (and mine of myself). I would like to say that wise acknowledgement of the need for life balance led me to this place, but in fact I had no choice.  After a spring of declining health and a hospitalization, I needed to focus on regaining my strength and rebuilding my health.

Thanks to my hematologist/oncologist, who, because he deals mostly with cancer patients seems more focused on supporting patients through treatment in a holistic way than my other doctors, set me up with home nursing care including IV fluids and iron, I was able to function again while waiting for my new biologics to start kicking in.  I cannot say enough good things about home health care – attentive, responsive, convenient, safer from an infection control standpoint, and much more cost-effective.  The two months of home health cost me and my insurance company less than $500 compared to the $7,000 that the 1.5 days in the ER and “observation room” in the hospital where I received the same interventions.

Of course, as a recovering patient advocate, now feeling a bit more spry, although slightly limited by my midline catheter for prolonged IV access, and with time on my hands, I could turn my attention to reforming the system that landed me, a highly activated adherent patient, in the hospital in the first place.  Thank you to everyone who read my May 14 post, Cumulative Burden.  Consider this the next chapter.

I wrote a lengthy letter to my hospital, detailing (respectfully) my specific concerns about safety, infection control, HIPAA violations, access and use of data, and communication loops, with my recommendations, and after giving my gastroenterologist the courtesy of reading it first, I hand-delivered the letter to the chief of medicine and the heads of transplant and GI. And then I waited, and waited for a response that never came.

Ok, so the first letter I had started “as an unsatisfied patient of your GI, transplant, and immunology services . . .” The second letter, sent after being ignored for 35 days, began, “as an attorney with a significant social media presence . . . I will require your response on [date] by 5:00 pm EDT”, and was sent to the CEOs of the hospital and hospital system. That got a response.  Why, though, did it need to go that far?  And aren’t they lucky that I was (and am) more interested in collaborating to improve care for myself and other patients than in exposing and shaming them for shoddy care?

Note to hospital execs: If you get a letter like this.  Answer it! Pick up the phone and call the patient or patient family member who took the time to write and gain a potential brand ambassador (and avoid a potential lawsuit and PR crisis to boot).

With this new  dialogue, we have been able to establish the following:

  1. Yes, I was put in the “observation room” inappropriately given my immunosuppression status and need for bathroom access.
  2. Yes, the way that the “observation room” adjoins to the resident’s conference room where they are putting together treatment plans for all the patients on the floor does pose HIPAA problems since the patient in the “observation room” can hear everything.
  3. Yes, I could have been admitted directly to the floor, saving the ER costs and infection exposure.
  4. No, there are no patients on the board of the hospital or hospital system. (That will have to change.)
  5. No, there is no patient and family advisory council, although there was just a launch meeting to develop one. (Yes, I do plan to be on it!)
  6. Yes, a new patient advocacy VP has just been hired with experience from the hospitality industry as well as a hospital background. (I will be meeting with her in October.)
  7. Yes, we can find a way to bring all my doctors together in one place and time to discuss an integrated care plan for me. (This is scheduled for next Monday so stay tuned.)

So as I face the fall, this post-Labor Day concentration of activity until Thanksgiving, healthy enough to win the Tour de France (no yellow jersey for me, though, given the load of banned substances flowing through me), I take with me from this summer a few lessons:

–          Just say no. It is ok to take a step back to be able to take 2 steps forward.  Everything will not fall apart if I say no to commitments for a while.

–          Patient advocacy begins at home.  I need to press my medical “team” to work better together and not be satisfied until we have optimized my health, not simply accept being out of crisis or functioning ok.  Home health may also need to be a continuing option and I am not ashamed to use it if I need it, rather than soldier on suboptimally.  Only when I am in great health can I be of great use to the larger patient community.

–          Don’t take no for an answer. If the system does not work for a patient like me, it is certainly not working for other patients with fewer financial, time, or health literacy resources.  Once I stopped glossing over the gaps in care (because my physician husband and I could fill many of them ourselves for me and I wanted to move on to do other things) I was able to see how to truly be helpful to other patients at my institution and respectfully, I cannot let the doctors and hospital execs refuse to change and improve or slow-walk the process. Its time has come.  People’s lives depend on it.

We Are All Doctors

July 21st, 2012

Well of course we are not all doctors.  What a ludicrous statement.  Just because I have changed a band-aid, taken a temperature, “diagnosed” a headache and appropriately treated with an acetaminophen, and even clipped an in-grown toe-nail does not make me a healthcare professional.  I do not have the education, training, and experience that would entitle me to be called a doctor, nor would I be able to provide the insights and informed perspective of a doctor.

Yet, in meeting after meeting lately I hear the statement “We are all patients” made to justify people who have not lived with a chronic illness, not been hospitalized, not experienced the fear, confusion, frustration and urgency born from navigating and confronting a serious disease, shaping policy and health system change on behalf of patients.  I believe that this is as ludicrous and dangerous as my attempting to channel the physician perspective without having lived the physician or healthcare professional experience.

I would like to see how far we would get if we tried to put together a panel on “The Physician Perspective on Health Care Reform” with only patients and patient advocates, shrug that we could not find a doctor to speak (They are too busy after all, and we wouldn’t want to put any more burdens on them), or that it was too hard to choose among just one specialty, but excuse our omission because the panelists chosen know doctors, have spoken with them, maybe even did a focus group with doctors so feel perfectly qualified to speak on their behalf.  That clearly would not be tolerated.  So why are we content to go through the charade of  discussing or designing healthcare without including the people most affected by healthcare and with the most knowledge about and incentive to fix the gaps, needs, and impact of healthcare challenges and failures?

I understand the well-meaning attempt to broaden the group of people focused on healthcare issues motivating many who wave the “we are all patients” flag, but there is a difference between having an interest or future stake in a high-quality healthcare system and having the experience that qualifies you to play a meaningful role in shaping that system.  Patients who have earned that experience the hard way should not be devalued or disrespected by lumping them in with everyone who has had an annual physical in the same way a leading neurologist’s expertise would never be compared to someone who watched a documentary on the brain.

PCORI National Patient and Stakeholder Dialogue

February 27th, 2012

Today the Patient Centered Outcomes Research Institute held a National Patient and Stakeholder Dialogue at the National Press Club. #pcoridialogue

The purpose of this meeting was to facilitate discussion and hear public comment on the draft National Priorities and Research Agenda.   This continues the laudable pattern of public and patient engagement that has distinguished PCORI under Executive Director, Joe Selby, the perfect Beltway outsider (IMHO) for this non-traditional entity charged with doing things differently.  I loved that COO, Anne Beal was live tweeting from the meeting and reviewing comments in real time. @anne_beal   @acbeal

The new Director and Deputy Director for Patient Engagement, Judith Glanz and Sue Sheridan were also introduced.

The agenda included  two panels  — the first featuring representatives of patient and caregiver advocacy organizations and the second clinician and business representatives – followed by 3 ½ hours of public comment.

One early observation was that there was no patient panel.  A distinction between consumers/public, patients, and patient advocacy organizations was made several times and hopefully will be better reflected in future meetings.  While I understand the concerns with selecting patient speakers for a panel, rather than comment – how do you select a few to represent many?  How do you ensure that patients stick to the rules of engagement for the meeting and provide remarks that are appropriate and productive? – if PCORI which is specifically tasked with engaging patients at every level won’t make the effort to construct a patients’ panel how can we expect any other meeting organizer.  @trishatorrey wrote a great recent blog post borne of her frustrations with this issue.

Among emerging resources to help identified qualified patient speakers is Speaker Link

My key takeaways from the event:

  1. PCORI should be given a great deal of credit in how proactive they are in soliciting patient input, but there is much work to be done in changing the culture of policymaking entities, physicians, researchers and other stakeholders to accept a fully participatory role for patients.
  2. PCORI Board of Governors member Dr. Harlan Krumholz @hmkyale is a passionate speaker on defining authentic patient-centeredness.  He belongs in that rare circle of physicians @tedeytan and @drdannysands  who are capable of playing that essential role of bridging the patient and physicians worlds to catalyze patient-centric change.
  3. There were a number of speakers from trade associations and established interests that criticized PCORI for moving too fast, for iterating documents in parallel, rather than in sequence, and for not specifying (at this stage) the disease states or conditions that will be researched as part of this agenda.    I find this criticism disingenuous, coming from the organizations staffed and most capable of evaluating and commenting quickly.  A cynicism from two decades in Washington leads me to think that the real issue is that there was no one point to lobby for or against in the current construct.  Individual grants from diverse researchers and research communities will bypass the traditional trade association gate.  I think that the current emphasis on mechanisms of patient engagement and high level description of five areas that cross disease states is appropriate given the work that needs to be done in establishing this field and approach to patient engagement in healthcare and healthcare research.
  4. My comments to the agenda include:
    1.  Education (see my post on Research Literacy  should be a precursor to the communication and dissemination of comparative effectiveness research
    2. As PCORI does move into more specific disease states that emphasis be given to research on decision support for patients with complex conditions, comorbidities, rare diseases, and stigma that are currently underrepresented in research and where there are huge gaps in knowledge
    3. Definition of treatment include post-intervention management and issues related to survivorship.

Comments on the agenda are open until March 15, 2012.  Make your voice heard.

I look forward to working with PCORI and the new patient engagement staff to advance the mission of patient-centric ( dare we hope for patient-driven) comparative effectiveness research.

New Year’s Resolutions for E-patients

January 11th, 2012

By this point in January we are all wearing our Fitbits and logging our every mouthful into Lose It!, but beyond our own quantified self, what resolutions have we made to be better e-patient advocates?  I propose and have made the following 3 resolutions and ask that you join with me or share with me your own.

In 2012 I resolve to:

  1. Courageously and persistently share my e-patient advocacy with my own care team and institution to support (i.e. insist upon) their adoption of new technology and the workflow changes necessary to partner with engaged patients.  (The e-patient version of think global, act local.)
  2.  Improve my research literacy (more in next week’s post) – my facility with the terminology, methodologies, and mathematics required to converse with the scientific community and interpret medical information.
  3.   Schedule time to proactively mentor other emerging e-patients (as well as spend time with my e-patient mentors).  Congratulations to all on the Top 10 Healthcare Influencers to Follow List.

Here’s to you being not only more active in 2012, but more actively engaged!

Think of Joining the Society for Participatory Medicine. @S4PM

A Patient’s Perspective on Improving Care Transitions

October 25th, 2011

Two recent speaking engagements provided me the opportunity to think deeply about the discharge process, an area of healthcare delivery rampant with errors and missed opportunities to support sustained healing and health for patients. This is an area of keen interest to me as I have experienced the discharge/transition process 16 times ( I may have lost count in there somewhere) as a patient and twice as a caregiver to spouse and parent.

On October 20th I delivered Grand Rounds at Montgomery General Hospital. My topic was Patients as Partners in Quality Care Improvement.

On October 13th I had the privilege of being the patient speaker at an event focused on identifying opportunities for technology to improve the transition of patients from acute care settings to home or a rehabilitation or long term care facility.  “Putting the IT in TransITions” was convened by the Office of the National Coordinator for HIT as well as the John A. Hartford Foundation and the Gordon and Betty Moore Foundation in Washington, DC at the Kaiser Permanente Center for Total Health.

The three questions posed were:

1. What are the most important problem statements from the patient’s and caregiver’s perspective that require our attention?

2. Where is IT effectively addressing these challenges now?

3. Where is innovation most needed now?

The invited attendees participated in breakout sessions to brainstorm on the four particular areas of transition:

1. Discharge process

2. Medication reconciliation

3. Information flow and feedback

4. Patient and care-giver activation


Below are some of the key points from my presentation.  The entire webcast can be seen at  (I start at minute 42)

Successful discharge begins at or before admission.

Reducing readmission is based on addressing the totality of the circumstances that a patient encounters when they leave the hospital.

Opportunity 1: Accurate electronic transmission and appropriate exchange of a patient’s medical history, including known allergies and other alerts can aid and speed diagnosis, avoid unnecessary tests and scans, avoid repeating failed treatments, and laser focus on will work. [Tech Op:  Portable Patient Health Record]

Opportunity 2: Sharing information, including lab values, with patients and caregivers in real time creates trust, and leverages the ability of patients and families to spot errors and omissions.  An EMR is only as good as the information is used. [Tech Op:  EMR]

Opportunity 3: Coordinating, accelerating the integration and conflict resolution of information across specialists is an essential HIT function that power to truly impact care and bend the cost curve in the management of complex patients.  As a liver transplant recipient for underlying autoimmune conditions that manifest in GI and other areas I need to get sign off from all groups before discharge.  This has often taken a full days worth of nurse-hours to procure. [Tech Op: EMR]

Opportunity 4: Beginning the education process – nutrition, self-care, new medication regimens – long before the discharge day would provide an opportunity for patients to begin formulating questions for medical staff in a more timely fashion and start the process of strategizing how to adhere. [Tech Op: Ipads loaded with videos, links to Medline, patient disease state communities]

Opportunity 5: Customized, tailored discharge plans can be populated and continuously updated throughout the hospital stay, triggering communications to long term stay or rehabilitation facilities for certain conditions, orders for medications, equipment, even groceries that meet a prescribed dietary change.  Everything a patient needs to do or have for the immediate post-discharge period needs to be ordered, arranged, scheduled and delivered before they leave the hospital. No exceptions.  Patients are sick, tired, happy to finally be home.  Caregivers and sick, tired, happy to finally be home.  They may not be able to leave the patient to run between pharmacy, grocery store, medical supply once they get home.  Follow up calls to physicians and often not made in the return to home life.  Let’s say good bye to the scribbled sheet of paper with vague generic instructions hastily put together in the final hours of a stay.  [Tech Op: E-prescribing, Peapod/Safeway grocery delivery, RHIE to link to appt scheduling]

Opportunity 6:  Provide resources to fill in the gaps for tasks the patient or caregiver would normally have to do at home instead of resting and healing.  A list of or links to childcare, respite care, lawn service, short- term concierge services, would both give permission to rest and help locate appropriate assistance.  Tools to help patient families organize their own communities for support would also be helpful.  There is a lot left on patient family shoulders even for those who have visiting nurses and other clinical support. [Tech Op:  Foursquare, Groupon, Caring Bridge]

None of these scenarios require anything more than technology we have available today. The reality is that transformation of the discharge/transition process will take a combination of change in workflow and culture in addition to technology.

If you are patient/caregiver who has used a technological solution to help with a care transition or a vendor who has or is working on a solution addressing one of these opportunities, please comment and let us all know.

Give Me My Dang Lab Results! OK. What? Thanks!

September 19th, 2011

As a dutiful patient, one week prior to my doctor’s appointment I got my requisite blood tests done.   I use Lab Corp instead of going to the hospital lab because I can make convenient appointments online, get email confirmations, and quick access to the results.   In a surprising turn of events I actually received a call from my doctor’s office with the results 3 days later.  I say surprising because normally I have to beg, plead, call, or at least charm a nurse to get my results at all.  The caller announced that the results were “fine”.  Now in 27 years with a chronic disease “fine” is not a word I usually heard in conjunction with my bloodwork, so I asked if I could see them.  (note: every patient should do this)  “OK” was the quick answer.  I could fax or email them to you.  Yee Haw!! Now we were getting somewhere.  Of course there were abnormal results and some tests that should have been conducted that were not  (one way to get “fine” results is apparently to omit tests I don’t do well on), but the liver enzymes were solid.  So, fine.  We discussed the other issues when I got to my appointment.   But let’s not miss the point here people, the big cultural shift, the message received, at least this one institution – I had the right to see my blood test results.

To ensure that all patients, not just the lucky few with enlightened physicians have this crucial information, last week at the launch of the HHS/ONC Consumer Engagement in HIT campaign a proposed rule was announced to allow patients direct access to their results from the lab.  This is an enormous step forward in the annals of patient engagement and participatory medicine.  Please submit comments to make sure that this rule passes at  or by following the directions in the Federal Register Announcement.

HHS Proposed Rule Allowing Direct Access to Lab Results

Center for Democracy & Technology

Beyond the ACO – Creating the Well-Being Society

September 8th, 2011


I have spent the past two rainy days with senior executives from the Adventist Healthcare System and a range of integrative medicine and community leaders as part of an effort called Next Century Health. Next Century Health is a visionary initiative of the Adventist Healthcare System, a  large integrated  network of hospitals, rehab facilities, home health, and other health services, to respond to the key trends and drivers transforming healthcare today in something more than a pro forma fashion.  I, along with such notables as former HHS Secretary Dr. Louis Sullivan, former FDA Commissioner Dr. David Kessler, and former Senator Dr. Bill Frist, are committed members of the Next Century Health Leadership Council.  Below are 5 reasons I think that Next Century Health may actually achieve its ambitious goal of advancing whole-person health and healing across the greater community.

  1. It’s in their culture.  The Adventist HealthCare System has its roots in the Battlecreek, Michigan  health resort of Kellogg’s corn flakes fame.  It flourished with a focus on connected mind, body, and spirit for healing purposes.  Discussions of whole-person health and well-being are authentically part of their DNA as an organization.
  2. They have a track record.  The five-year and counting Center for Health Disparities established by Adventist is a create model of addressing tough issues, working with community leaders, and keeping long-term commitments.
  3. Vision before bricks and mortar. The system has several large-scale building projects in the works, including a massive White Oak Campus adjacent to the FDA.  Integrating elements into every building and campus expansion plan that actively promote fitness, restoration, and connection from the start rather than as an afterthought greatly increases their chances of adoption and execution.
  4. Partnership, Structure, and Sustainability.  The two days of discussion included very tactical and tangible planning for the best partnerships, structures, communication loops, and policies to sustain the effort for decades.  This could have been so easily just a PR opportunity, but the time commitment of the hospital and system presidents to a multi-hour roll-up-your-sleeves  brainstorming and options weighing lent a great deal of credibility.
  5. Stewardship.  The second day of the Next Century Health meeting was a forum on Whole Person Health, Scientific Advancements & Ending Obesity with panelists including former AARP CEO Bill Novelli and Partnership for a Healthier America CEO Larry Soler.  A robust conversation on the root causes and potential solutions  (active, passive, and sanction-based) for the obesity crisis was held for several hours, but what impacted me most was the last comment of the morning, made by Dr. Alan Handysides, Director of the Department of Health Ministries, and a member of the Next Century Health Leadership Council, that core to the Adventist approach is the belief that stewardship of health has value.  From roots that strong a mighty tree can grow.

Learn more about Next Century Health at


Calling all Cancer Patient Advocates!!!

June 28th, 2011

In my estimation, the FDA does the best job of any federal agency of effectively supporting and leveraging empowered patients in meaningful ways.

Here is a great example:
If you are interested in learning more about how the FDA develops and regulates drugs and meet the actual people involved please consider registering for this Patient Network Conference. Registration is free!

Dear Patient Advocacy Community,

The Food and Drug Administration’s Office of Special Health Issues is sponsoring a Patient Network Conference that will take place on Friday, July 15th, 2011, from 8:00 a.m. to 5:00 p.m. at the FDA Campus at White Oak. The address for the FDA Campus is 10903 New Hampshire Avenue, Building 31 Great Room, Silver Spring, MD, 20993.

This conference will include sessions addressing a variety of topics for the oncology patient advocacy community including drug, biologic, and device development and regulatory processes as well as interactive sessions with management from the Office of Oncology Drug Products in the Center for Drug Evaluation and Research. Attached is a draft agenda.

Seating for the conference will be limited to the first 150 persons. The conference will also be available via live webcast. The web link for this will be provided closer to the conference date.

To register for the conference, please send an email to: with the following information:

First Name:
Last Name:
Preferred Attendance: In Person or Webinar
Current Role:
– FDA Patient Representative
– Patient Advocacy Group
– Patient / Survivor
– Other

For directions, parking, and local lodging information, please refer to the following website:

We look forward to seeing you on July 15th.

Best Regards,
FDA Patient Network Conference Team