Imagine that you are a patient. Imagine that you
have an impaired immune system that can cause
you to get very, very sick…Maybe even kill you.
Imagine that the only thing between you and your
hope to stay alive is a treatment that you aren’t getting
because your access to the medication depends on
reimbursement that is not there for you.
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There are an estimated 250,000 patients in the
United States who suffer from primary immune
deficiency disease (PIDD).
The majority of these
patients require antibody replacement therapy,
and they don’t have to imagine, because for them,
this is exactly what is happening.
The only viable treatment for these patients is to
receive a treatment that replaces missing parts of
their immune systems through infusions called
IVIG (intravenous immunoglobulin).
Without it, these PIDD patients are highly susceptible to
severe infections and debilitating illnesses and are
at a significantly increased risk of death.
The significance of IVIG to patients with PIDD
cannot be overstated. There are no alternative
treatments.
Beginning in early 2005, reports surfaced that
patient access for Medicare beneficiaries was being
compromised through the new payment system
(ASP+6%) that went into effect on January 1st of
that year. Congress took action.
In August of 2005, the Ways & Means Subcommittee on Health and the Energy & Commerce Subcommittee on
Health asked the Office of the Inspector General (OIG) to investigate.
Throughout late 2005 and early 2006, the OIG spoke
with manufacturers, wholesalers and physicians
affiliated with IVIG. The OIG then did surveys and
collected data on supply and pricing.
After nearly two years of investigation, the OIG sent preliminary updates to Congress, but has still not produced a final report with recommendations for dealing with
the Medicare reimbursement problem.
The Secretary of HHS also asked for another
study on the demand and supply of IVIG and that report has not been issued either.
Congress has said that it cannot act on a solution until
it has seen final results and recommendations from
these two studies.
In the meantime, the Immune Deficiency Foundation (IDF) has conducted its own surveys which show that large numbers of Medicare patients are no longer being treated in their doctors’ offices because of inadequate reimbursement and are postponing treatments and increasing the intervals between treatments.
The result for them is more infections, pneumonia, bronchitis, and increased use of antibiotics, among others.
The time has come for Congress to act. Pass legislation to deal with the reimbursement issues that have created access problems for patients.
We aren’t looking for special treatment; we’re just looking for treatment. Patients can’t afford to wait anymore.
It’s time to do the right thing—now—and assure that
Medicare patients have access to IVIG they need to stay well and alive.
This is truly Bureaucracy to Die For…
www.primaryimmune.org
The time has come for Congress to act. Pass legislation to deal with the reimbursement issues that have created access problems for patients who need IVIG.
