[Congressional Record Volume 145, Number 43 (Thursday, March 18, 1999)]
[Extensions of Remarks]
[Pages E492-E493]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




      INTRODUCTION OF THE WORK INCENTIVES IMPROVEMENT ACT OF 1999

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                        HON. FORTNEY PETE STARK

                             of california

                    in the house of representatives

                        Thursday, March 18, 1999

  Mr. STARK. Mr. Speaker, I am honored to co-sponsor the Work 
Incentives Improvement Act of 1999. This bill would remove the barriers 
to health insurance and employment inherent in the current disability 
insurance (DI) system, and enable many Americans to return to work. 
Disabled people have much to offer. It is time that we recognize and 
encourage them to participate as contributing members of society.
  I am especially pleased to support the Medicare and Medicaid 
provisions of this bill. Without these programs, many people living 
with disabilities would not have access to the care that is so vital to 
their health and well-being. Because private health insurance is not 
affordable or available to them, even after returning

[[Page E493]]

to work, we must keep Medicare and Medicaid available to the working 
disabled.
  There is one segment to the disabled population that I urge my 
colleagues to give special consideration: End Stage Renal Disease 
patients.
  As you know, there are about 260,000 Americans on dialysis and 
another 80,000 who are dependent on a kidney transplant (with about 
11,500 kidney transplants performed annually). About 120,000 dialysis 
patients are of working age (between 20 and 64), yet fewer than 28,000 
are working.
  The ``USRDS Abstract of Medical Evidence Reports, June 1, 1996 to 
June 1, 1997,'' reveals that 38.1% of all dialysis patients 18-60 years 
of age were employed full time, part time, or were students before 
onset of ESRD.
  But only 22.9% of ESRD patients in the same age group were employed 
full time, part time, or were students after the start of dialysis. 
This 15% (38.1% minus 22.9%) differential is the prime hope for return 
to work efforts.
  Of the transplant patients, most (88%) are of working age, but only 
about half of them are working.
  Section 102 of your bill provides Medicare coverage for working 
individuals with disabilities--but ESRD dialysis patients already have 
this protection. For transplant patients, Medicare does not cover their 
major health need--coverage of $8,000-$10,000 per year for 
immunosuppressive drugs--after 36 months.
  Clearly, we should tailor some special provisions to this population.
  I would like to suggest a series of ESRD return-to-work amendments 
that would save total government revenues in the long run. While these 
proposals may increase Medicare spending, they would reduce Social 
Security disability and Medicaid spending.
  There are just preliminary ideas, and I hope that you and the renal 
community could refine these ideas prior to mark-up.
  (1) A huge percentage of ESRD patients quality for Medicaid. The 
disease is so expensive ($40,000-$60,000 per patient per year) and the 
out-of-pocket costs so high that it impoverishes many. For transplant 
patients, the cost of life-saving immuno-suppressive drugs alone can be 
$8,000, $10,000 or more per year. No wonder many are tempted to avoid 
actions which would disqualify them for help.
  As part of general Medicare policy, I have always through that we 
should cover pharmaceuticals and, in particular, indefinitely cover 
immuno-suppressive. It is madding to hear the stories of $80,000-
$100,000 kidney transplants lost, because a patient couldn't afford the 
$10,000 per year of medicine.
  I think a good case can be made to add to this bill coverage of 
immuno-suppressives indefinitely, to encourage people to leave 
Medicaid/Disability and return to work.
  (2) Some ESRD facilities do a good social work job helping patients 
return to work. Others don't seem to even try. We should honor and 
reward those centers which, on a risk adjusted basis, are doing the 
best job of rehab in their renal network area.
  The honor could be as simple as a Secretarial award of excellence and 
public recognition.
  The reward could be something more tangible--a cash payment to the 
facility to each patients of working age who does not have severe co-
morbidities which the center is able to help return to work (above a 
baseline--perhaps 5% of eligible patients). For example, if a center 
had 100 working age patients, it could receive a $1000 payment for each 
patient above 5 who had lost employment and is helped to return to 
work. This would be a phenomenally successful investment and would 
particularly compensate the dialysis center for the cost of vocational 
rehab and social work.
  (3) Renal dialysis networks, which are designed to help ensure ESRD 
center quality, should be able to apply for designation as rehab 
agencies and for demonstration grants under this legislation.
  The law spelling out the duties of Networks has a heavy emphasis on 
rehabilitation. Indeed, it is the first duty listed:

  ``. . . encouraging, consistent with sound medical practice, the use 
of those treatment settings most compatible with the successful 
rehabilitation of the patient and the participation of patients, 
providers of services, and renal disease facilities in vocational 
rehabilitation programs;'' \1\
---------------------------------------------------------------------------
     \1\ Sec. 1881(c)(2)(A); see also (B) and (H).

  I suspect that the 17 Networks vary widely in their emphasis on 
rehabilitation. Again, the Network(s) that do the best should receive 
recognition and share their success with the others.
  (4) Kidney failure remains a medical mystery. It often happens very 
quickly, with no warning. But for thousands of others, there is a 
gradual decline of kidney function. I am told by medical experts that 
in many cases the descent to terminal or end-stage renal disease can be 
showed by (1) nutrition counseling, or (2) medical treatment by 
nephrology specialists.
  I hope that you will make it clear that the Medicaid (or Medicare) 
funds provided in this program to prevent disability could be used to 
delay the on-set of the devastatingly disruptive and expensive ESRD. 
Monies spent in this area would return savings many times over.
  Also in the ``preventive area,'' some of the leaders in the renal 
community are reporting exciting results from more frequent, almost 
nightly dialysis. Like frequent testing by diabetics for blood sugar 
levels, it may be that more frequent dialysis can result in a less 
disrupted life and better chance to contribute to the workforce. We 
should watch these medical developments and if there is a chance that 
some additional spending on more frequent, but less disruptive dialysis 
would encourage return to work, we should be supportive.
  (5) Finally, I urge you to coordinate this bill with another proposal 
of the Administrative--skilled nursing facility employment of aides to 
help with feeding. As you know, last summer we received a GAO report on 
the horror of malnutrition and death by starvation in some nursing 
homes, due to a lack of staffing to take the time to help patients who 
have trouble eating and swallowing and who take a long, long time to 
eat (e.g., many stroke patients). A coordinated effort by the nursing 
home industry and ESRD centers to fill this minimum wage type position 
would help nursing home patients while starting many long-out-of-work 
ESRD patients back on the road to work.
  Mr. Speaker, these are just a few, quick ideas. I am sure that 
experts in this field could suggest other steps to ensure that the ESRD 
program not only saves lives, but helps people have a good and 
productive life.

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