Compassionate Allowances Outreach Hearing on Rare Diseases

294 Pages·2008·0.62 MB·English

by  Social Security Administration

1
1 SOCIAL SECURITY ADMINISTRATION
2
3 COMPASSIONATE ALLOWANCES OUTREACH HEARING
4 ON RARE DISEASES
5
6
7
8
9 Washington, D.C.
10 Tuesday, December 4, 2007
11
12 The Outreach Hearing on Rare Disease
13 began at 9:21 a.m.
14
15 BEFORE MEMBERS:
16 MICHAEL J. ASTRUE, Commissioner of Social Security
17 STEPHEN GROFT, Director, NIH Office of Rare Diseases
18 FRANK CRISTAUDO, Chief Administrative Law Judge
19 DAVID RUST, Acting Deputy Commissioner for
Disability and Income Security Programs
20
21
22 Reported by: Cindy L. Sebo, RMR, CSR, CRR, RPR
2
1 C O N T E N T S
2
3 OVERVIEW OF RARE DISEASES
4 PANEL MEMBERS: PAGE
5 DIANE DORMAN, Vice President for Public
Policy, National Organization for Rare
6 Disorders 23
7
PAUL LIPKIN, M.D., Director, Center for
8 Development and Learning, Kennedy Kreiger
Institute and Assistant Professor of
9 Pediatrics, The Johns Hopkins University
School of Medicine, for the American
10 Academy of Pediatrics 30
11
NONI M. (SISSI) LANGFORD, Chair, Committee
12 on Federal Legislation, on behalf of the
National MPS Society (Caregiver) 38
13
14
15 RARE DISEASES AND THE ADJUDICATORY PROCESS
16 PANEL MEMBERS: PAGE
17 LINDA LANDRY, Senior Attorney, Disability
Law Center 88
18
19 WILLIAM LEACH, Staff Attorney, A.C.C.E.S.S.
Program 105
20
21 KIM BERNSTEIN, Director, A.C.C.E.S.S.
Program 122
22
3
1 RARE DISEASES IN ADULTS
2 PANEL MEMBERS: PAGE
3 WALTER KOROSHETZ, Deputy Director, National
Institutes of Neurological Disorders and
4 Stroke, National Institutes of Health 163
5
STEVE GIBSON, Vice President of Government
6 Relations and Public Affairs, ALS Association 176
7
RON BARTEK, President, Friedreich's Ataxia
8 Research Alliance (Caregiver) 191
9
10 RARE DISEASES AND TECHNOLOGY
11 PANEL MEMBERS: PAGE
12 R. RODNEY HOWELL, M.D., President, American
College of Medical Genetics Foundation and
13 Chair, Secretary Leavitt's Advisory Committee
on Heritable Disorders and Genetic Diseases
14 in Newborns and Children 242
15
WILLIAM A. GAHL, M.D., Ph.D., Clinical Director
16 National Human Genome Research Institute,
National Institutes of Health 251
17
18 P. SUZANNE HART, Ph.D., National Human Genome
Research Institute,National Institutes of
19 Health 252
20
ANDREA GROPMAN, M.D., Associate Professor of
21 Pediatrics and Neurology, George Washington
University, School of Medicine and Health
22 Sciences, Attending in Neurology, Children's
4
1 MS. BRAUNSTEIN: Good morning. I'm
2 Diane Braunstein, and I'm the director of
3 Compassionate Allowances and Medical Improvement
4 for the Social Security Administration.
5 And before we begin the hearing, I
6 just have a few housekeeping items I wanted to go
7 over.
8 In the event that there is an
9 emergency sounding of an alarm, people should exit
10 through the back door over there (indicating),
11 outside, proceed to the end of the block, turn
12 right and go under the underpass and wait for
13 instructions.
14 Second of all, no cell phones can be
15 used in the main hearing room. No food is
16 allowed.
17 For people who will be testifying or
18 speaking, the sound system is not working
19 optimally, so please speak rather loudly.
20 And the last thing is that we are here
21 as the guests of the International Trade
22 Commission, represented by Tawana Braxton over
5
1 here, and we appreciate their hospitality.
2 MS. BRAXTON: Thank you.
3 COMMISSIONER ASTRUE: Good morning.
4 My name is Michael Astrue, and I'm the
5 Commissioner of Social Security.
6 Welcome to this outreach hearing on
7 compassionate allowances for people with rare
8 diseases.
9 I appreciate your joining us at this
10 critical time as we try to improve the way we make
11 decisions about disability claims.
12 Our top priority is to reduce the
13 backlog of disability cases. This is America, and
14 it is simply not acceptable for Americans to
15 wait years for a final decision on a claim.
16 We are overdue for change, and we are
17 committed to developing processes that are as fair
18 and as speedy as possible.
19 To achieve this goal, we have taken,
20 or will take soon, a number of steps to better
21 manage our workloads. The program includes four
22 components: one, accelerating reviews of cases
6
1 likely or certain to be approved; two, improving
2 our hearing procedures; three, increasing
3 adjudicatory capacity; and, four, increasing
4 efficiency through automation and improved
5 business processes.
6 Today's hearing focuses on the first
7 of these components, accelerating the review of
8 cases likely or certain to be approved.
9 When Congress first enacted Title II,
10 to a large extent, it viewed the program as a
11 fairly limited one, directed primarily at a fairly
12 small number of middle age workers who needed a
13 bridge to early retirement.
14 Today, our disability programs are far
15 larger and more diverse than Congress initially
16 envisioned.
17 Title II and Title XVI are critical to
18 people from all walks of life, including children
19 born with serious defects, wounded warriors
20 returning with traumatic physical and
21 psychological injuries, and the homeless and many
22 others.
7
1 By comparison, the way that we process
2 medical information to define disability has not
3 changed in any fundamental way for decades.
4 We divide our listings into 14 body
5 systems, and we only update those --
6 COMMISSIONER ASTRUE: I'll try to
7 speak a little bit more close into the microphone.
8 I was forewarned that there had been some
9 microphone issues.
10 Can you hear me in the back, anyway?
11 UNIDENTIFIABLE VOICE: Yes.
12 COMMISSIONER ASTRUE: Yes.
13 Okay. Good.
14 All right. We don't usually overhaul
15 the listings unless we do comprehensive overhauls,
16 which sometimes wait decades.
17 Our recent release of updated
18 digestive regulations, which include diseases of
19 the liver and colon, were last revised in 1985.
8
1 We've also tended to focus on large
2 diseases and conditions. This model worked
3 perfectly fine in 1970, but it doesn't work today,
4 and it surely will not work in the coming decade
5 as we process a predicted 26 million disability
6 claims. We need to be more efficient and more
7 accurate.
8 When people don't receive their
9 benefits in as timely a manner as possible, it
10 undercuts the contributions they have made to the
11 system and can continue to make to our society.
12 Getting people benefits quickly is the
13 right thing to do, especially since claimants are
14 often in medical and financial distress.
15 Recognizing distress and wanting to
16 alleviate it is how the dictionary --
17 UNIDENTIFIABLE VOICE: Excuse me. Is
18 someone on line?
19 MS. WILSON: Yes.
20 UNIDENTIFIABLE VOICE: Ma'am, it is
21 very poor quality. I do apologize, but we're
22 getting about every fourth or fifth word that he
9
1 is saying.
2 MS. WILSON: Okay. We might be having
3 a technical difficulty at this time.
4 COMMISSIONER ASTRUE: Could -- could
5 you tell her that every time she calls in, she's
6 interrupting the hearing?
7 MS. WILSON: If you wouldn't mind,
8 every time you call in, it's actually
9 interrupting, so -- there are some
10 transcriptionists taking notes that we will be
11 posting on line. If it's -- there's difficulty
12 with actually hearing the conference, it will be
13 on line, available later after the conference.
14 UNIDENTIFIABLE VOICE: Okay. Now, you
15 do realize that it is being recorded on our end.
16 So --
17 MS. WILSON: Yes.
18 UNIDENTIFIABLE VOICE: -- it's just --
19 okay, all right. Okay. We will let them know.
20 MS. WILSON: Thank you.
21 COMMISSIONER ASTRUE: I -- I was
22 talking to the staff right before we started, and
10
1 I said, well, you know, when we look back on this
2 after two days, I'm sure there will be a few
3 kinks. I just didn't think they'd happen in the
4 first two minutes. So I apologize to everybody.
5 (Laughter.)
6 COMMISSIONER ASTRUE: Many of you know
7 from personal experience -- I know I do -- that
8 uncertainty during the long wait for decision on a
9 family member's case can make a bad decision -- a
10 bad situation even worse.
11 We're trying to change our business
12 model based on some very simple propositions.
13 First, we need to update our listings much more
14 often, and we need to greatly expand the number of
15 diseases and conditions which are included in our
16 listings.
17 Guidance for one rare disease
18 affecting 50,000 Americans will not make a
19 significant change on the overall process. But
20 if, over time, we can do it for between 100 to 500
21 rare diseases, we start to make a real difference.
22 These are precisely the types of cases