Preserving Patient Access to Treatments

03.09.00  Preserving Patient Access to Treatments


Since 2013, the AADA has been a member of the Coalition for Accessible Treatments (CAT), whose key priority is to advocate for enactment of H.R. 1600, the “Patients’ Access to Treatments Act” (PATA) sponsored by Rep. David McKinley (R-WV) and Rep. Lois Capps (D-CA). As a member of the National Organization of Rare Disorders, the PRP Alliance is represented on CAT by NORD.

Instead of having to pay a co-insurance amount that can cost hundreds if not thousands of dollars per month, the bill would limit cost-sharing requirements in a specialty tier (typically Tier IV or higher) to the co-pay dollar amount applicable to drugs in a non-preferred brand tier (typically Tier III). By limiting cost-sharing requirements, H.R 1600 would improve patient access to treatments, reduce disability and constrain health care costs.

Dermatologists are committed to providing the most effective and cost-efficient care and therapies to their patients.

Dermatologists often treat patients with chronic inflammatory, multi-system, disabling, and life-threatening conditions. These diseases can interfere with activities of daily life and have a substantial psychological impact on one’s personal well-being and ability to function in the workplace. Patients with psoriasis, for example, have an increased incidence of lymphoma, heart disease, obesity, type II diabetes, and metabolic syndrome. For patients with moderate to severe psoriasis, biologic therapy is often needed to maintain improvement and reduce co-morbidities, and inadequate treatment can lead to increased health care costs.

Traditionally, commercial health insurers have charged fixed co-pays for different tiers of medications: generics (Tier I), name brands (Tier II), and off formulary brand medications (Tier III). For example, the co-pays might be set at $10/$20/$50 for the three tiers. However, some commercial health insurance policies are now moving vital medications (mostly biologics) into higher level “specialty tiers” that require patients to bear a much higher level of the cost.

Instead of the traditional co-pay model, these “specialty tiers” are now commonly requiring patients to pay coinsurance instead, meaning that patients are paying a percentage of the actual cost of these drugs – often meaning patients are paying as much as 25 percent to 50 percent or more of the cost of the drugs. This tiering practice is costing patients hundreds, and in some cases, even thousands, of dollars per month for a single medication – rather than the traditional fixed, flat dollar co-payment. These practices are placing medically necessary treatments out of reach for average Americans.

In 2014, Avalere Health conducted a study to determine 1) how the bill would impact health insurance premiums caused by the specialty tier restriction, and 2) how patient costs for drugs in the other tiers be impacted.

Avalere’s cost analysis determined that the bill would have a negligible impact on premiums. PATA would increase premiums on average by $3 per year (25 cents per month) for plans with specialty tiers, if no other changes were made.

Published in On the Road…October 2015

American Society of Dermatopathology


The mission of the American Society of Dermatopathology (ASDP) is to improve quality of lives by continually advancing the theory and practice of Dermatopathology.

The ASDP serves as the hub of professional knowledge in the practice of Dermatopathology; promoting advances in the field, developmental opportunities, a platform for vigorous debate, and tools to share best practices among fellow practitioners.

The ASDP “Vision Statement” reads: “Reduce the burden of skin disease by promoting an accurate and efficient Dermatopathologic diagnosis for everyone.”

The monthly Journal of Cutaneous Pathology is only available to ASDP members. Members of the ASDP may access the Journal of Cutaneous Pathology online.

Contact information

The American Society of Dermatopathology (ASDP)
One Parkview Plaza, Suite 800
Oakbrook Terrace, IL 60181 USA
Phone: 847-686-2231

Key contacts:
✴  Leah Smith, Executive Director:
✴  Patricia Sullivan, Marketing Communications Manager:
✴  Christopher R. Shea, MD, Editor in Chief, Journal of Cutaneous Pathology since August 2016

Questions to be answered…

✴Has pityriasis rubra pilaris ever been a topic addressed in the Journal of Cutaneous Pathology? If not, what will it take to make it happen?

✴Has pityriasis rubra pilaris ever been the subject of an ASDP Case of the Month? If not, what will it take to make it happen?

✴How should a biopsy be performed to increase the likelihood of a timely and correct PRP diagnosis, e.g., location, technique, etc.

✴Specifically, what should the dermatopathologist be looking for?

✴How many ways can a dermatopathologist say that the findings are not absolutely PRP? Does the apparent “hedging of the bet” take place when a biopsy indicates psoriasis or topic dermatitis? Examples:

(a)  “The results were a bit more characteristic and compatible with pityriasis rubra pilaris.”

(b)  “The results are consistent with the clinical observations…”

(c) “… The results support a diagnosis of pityriasis rubra pilaris.”

Advocacy Opportuities:

✴ Establish a dialogue with the American Society of Dermatopathology

✴ Write away language tutorial about diagnosing PRP

✴ Advocate that dermatologists who suspect PRP instruct dermatopathologists to specifically look for PRP

✴ Attend the ASDP 54th annual meeting: October 26-29, 2017, Marriott Baltimore Waterfront Hotel; Baltimore, Maryland USA

✴ Visit the Department of Dermatology University Hospital of Geneva
Geneva, Switzerland

PRP Advocacy: American Society of Dermatopathology

Society to Improve Diagnosis in Medicine

02.04.09  MisDX —Society to Improve Diagnosis in Medicine


There are probably no cognitive tasks more challenging than diagnosis in medicine. There are over 10,000 known diseases and this list grows every year.

Being able to match a patient’s problems to one of these entities requires a remarkable ability to synthesize information and integrate this with knowledge acquired over years of training and experience. We honor those physicians who do this well, and celebrate the fact that diagnosis is so often correct.

That diagnosis succeeds is a testament to the dedication and skill of physicians, their teachers, the healthcare systems that enable the process, and the countless individuals and organizations that have created the diagnostic testing capabilities we enjoy today.  We also recognize that we could do better. When diagnosis is delayed or wrong, patients can be harmed, instead of helped by our efforts.

Our Society is dedicated to honoring all those who have been harmed by diagnostic error. We will all be patients some day, and we will all want the same thing: That our diagnosis is made quickly, accurately, efficiently, and safely. The Society to Improve Diagnosis in Medicine will strive to unite everyone and every organization that shares this vision so that we can focus on how to improve the diagnostic process.

Your energy, skill, and dedication will drive this improvement effort. Thanks for your interest in joining our quest to improve diagnosis – we need and appreciate your help and support.

Mark L Graber, MD FACP

President and Founder, Society to Improve Diagnosis in Medicine

SIDM’s Mission & Vision



Creating a world where no patients are harmed by Diagnostic error.



SIDM catalyzes and leads change to improve diagnosis and eliminate harm, in partnership with patients, their families, the healthcare community, and every interested stakeholder.



In July 2016, SIDM’s Board met to redefine the organization’s strategy and refocus its priorities for the ensuing two years. By conducting an assessment of the vision, mission and strategic direction, its leaders were able to evaluate current impact and organizational performance, and set the stage for future opportunities.

SP1- Global

Make improving diagnosis a strategic priority for healthcare.

SP2- Research

Advance research on diagnostic accuracy and error that will lead to reduced harms.

SP3- Education

Transform professional medical education to improve diagnosis and develop new leaders in diagnostic safety and quality.

SP4- Practice

Improve diagnostic performance in current clinical practice by engaging patients, clinicians, and the healthcare system.

SP5- Patient Engagement

Engage and integrate patients and their families in all diagnostic improvement efforts in order to achieve outcomes that matter to patients.

We need your help to jumpstart 2018

It took 3 days and 16 people to raise $1,225 in October, just enough to pay for the Rare Skin Disease Referral Initiative’s  initial mailing of “advocacy packets” to 88 teaching hospitals in the U.S. Bravo to all. The PRP Alliance needs another group of PRP patients and caregivers to step up and support the most important projects and activities of 2018. The new goal is $3,600.

❋  Constant Contact (annual cost): $840

The PRP Alliance pays a fee for the technology we use to gather and process the Worldwide PRP Census as well as manage the create and distribution of emails 

  National Organization of Rare Disorders (annual dues): $50

NORD is one of the most important allies we have developed over the past four years. PRP patients and caregivers seeking information about PRP will find a 5,000-word PRP Report — a coverture of the PRP Alliance and NORD.

 Coalition of Skin Diseases (annual dues): $200

As a CSD member, the PRP Alliance has been represented at the American Academy of Dermatology Association’s Annual Conference in Washington DC. Travel and lodging are covered by the AADA, out-of-pocket expenses are reimbursed.

 Rare Disease Week on Capitol Hill: $2,010.

Rare Disease Week on Capitol Hill (February 25 to March 1, 2018) brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.  Learn More

Expenses include:

  airfare: $400  lodging: $1,260  transportation to/from events: $150 ►  miscellaneous: $200.

❋  ReadyTalk Video Conferencing: $500

The use of video conferencing will become  increasingly import during 2018. Unlike Webex and GoToMeeting, ReadyTalk requires now downloading of applications. Simply click an invitational link and you will be part of the gathering.


Thanks to the 81 contributors who donated a total of $5,610. We surpassed the goal by $2,010. Donations are still being accepted.

✔︎    Jandina G (Portland, OR)
✔︎    Richard L (Lansdale, PA)
✔︎    Janice & Ernie F (Plover, WI)
✔︎    Jessica H (Stone Mountain, GA)
✔︎    Janet B (Forest Lake, MN)
✔︎    Carel R (Surrey, British Columbia, Canada)
✔︎    Cheri H (Omaha, NE)
✔︎    Frank G (Fairview, NC)
✔︎    Ronald O (Sharpsville, IN)
✔︎    Derek S (Otterville, Ontario, Canada
✔︎    John K (Weston, CT)
✔︎    Mike W (Park City, UT)
✔︎    Eve J (Byron Bay, NSW, Australia)
✔︎    Leslie L (Colorado Springs, CO)
✔︎    Vincent F (Cape Coral, FL)
✔︎    Sylvia C (Wayne, NJ)
✔︎    Susan O (Amesbury, MA)
✔︎    Chelsea B (Othello, WA)
✔︎    Helen M (Madison, WI)
✔︎    Phil S (Chester, England, UK)
✔︎    Anita R (Pearl, MS)
✔︎    Corrine P (Toronto, Ontario, Canada)
✔︎    Eric S (San Luis Obispo, CA)
✔︎    Wayne M (Kyabram, Victoria, Australia)
✔︎    Jerry R (Sausalito, CA)
✔︎    David H (Scottsdale, Tasmania, Australia),
✔︎    Suzanne M (LaPlata, MD)
✔︎    Paula M (Los Angeles County, CA)
✔︎    Debra W (Winston-Salem, NC)
✔︎    Martin W (Wolverhampton, England, UK)
✔︎    Vickie B (San Diego, CA)
✔︎    Sandi H (Turtle Creek, PA)
✔︎    Aziz T (Laurens, SC)
✔︎    Diane H (Minneapolis, MN)
✔︎    Donna S (Beaumont Hills, NSW, Australia)
✔︎    Diedre H (Houlma, LA)
✔︎    Tierney R (Virginia Beach, VA)
✔︎    Bill M (Plano, TX)
✔︎    Elaine A (Reno, NV)
✔︎    Sara K (Miami,FL)
✔︎    Cay B (Berthold, CO)
✔︎    Darcy L (Colorado Springs, CO)
✔︎    Cami S (San Jose, CA)
✔︎    Sharlene C (Australia)
✔︎    Linda L (Somerset, CA)
✔︎    Roberta K (Sicklerville, NJ)
✔︎    Deborah C (Royal Palm Beach, FL)
✔︎    Marion M (Dublin, Ireland)
✔︎    Jan & Malcolm T (Ringwood, NJ)
✔︎    Joan P (Portland, OR)
✔︎    Mark & Paul A (Boston, MA)
✔︎    Joyce G & Stephen T (location n/a)
✔︎    Daina B (West Sacramento, CA)
✔︎    Jeff S (Dayton, OH)
✔︎    Nicola G (Bannockburn, Otago, New Zealand)
✔︎    Curt H (Santa Clarita, CA)
✔︎    Mark A (Boston, MA)
✔︎    Dan M (Rutland, VT)
✔︎    Burt U (Kenedy, TX)
✔︎    Gary R (Port Perry, Ontario, Canada)
✔︎    Megan Q (Grants Pass, OR)
✔︎    Carol K (Plano, TX
✔︎    Holly B (Boerne, TX)
✔︎    Jeffrey D (Rockwall, TX)
✔︎    Erin M (Boulder, CO)
✔︎    Lindsay S (Charlotte, NC)
✔︎    Beau R (San Francisco, CA)
✔︎    Stewart L (Fareham, England, UK)
✔︎    Sherilene G (Lake Jackson, TX)
✔︎    Stacy K (Hampton, VA)
✔︎    Mary H (Novato, CA)
✔︎    Pat N (San Diego, CA)
✔︎    Gena H (Merced, CA)
✔︎    John M (Sequin, TX)
✔︎    Edward B (Pacifica, CA)
✔︎    Carol F (Allen, TX)
✔︎    Pat W (Fort Townsend, MD)
✔︎    Jerry & Jodeen M (Dickinson, ND
✔︎    Guy F (Scaggsville, MD)
✔︎    Veronica L (Melbourne, Victoria, Australia)

Click Here to donate to the 2017-18 PRP Worldwide Census effort