CKD Advocacy Community Needs to Take Their Binders

Cross posted from DSEN
CKD Advocacy Community Needs to Take Their Binders

	 		 			 				By Bill Peckham

The CKD advocacy community is calcified, they could really use some binders.

I spent some time this afternoon looking through the advocacy, professional and provider sites on DSEN’s big link list. With two exceptions there is no mention of HR 3590 the Patient Protection and Affordable Care Act, the health insurance reform legislation signed into law last Sunday. When MIPPA passed there were numerous communications from all corners of the CKD advocacy world explaining the details of the legislation and its expected impact.

To date I have not seen a single communication from any advocacy group on the impact of the health insurance bill. Only the Lupus Foundation of America highlights some of the bill’s provisions directly, while the American Society of Transplantation links to a pdf of the Bryan Cave Health Reform Update (March 24, 2010)(PDF link). That’s it. No one else even mention the historic passage of reform that will unalterably change the CKD advocacy landscape. I didn’t even see links to news articles let alone CKD specific analysis (I apologize in advance if I missed one - I looked).

How can it be, with all the highly paid analysts at the various DC lobbying firms, that no one seems to have looked at this bill through the CKD public policy lens? I believe that this bill makes obsolete many of the positions held by the dialysis and transplant community, does it? Does making insurance widely available obviate the need to extend Medicare immunosuppressant drug coverage? I think it does. Why hasn’t any of the many organizations advocating for expanded access to immunosuppressants come forward with definitive analysis one way or the other?

I think that the legislation, by adding some 20,000,000 previously uninsured adults to the insurance roles, means that thousands of people who previously would have started dialysis without any health insurance will now start dialysis with private insurance primary. If those 20 million adults are average how many would be expected to start dialysis in a given year? According to the USRDS ADR the number of people who start dialysis each year is about 350 per million - so in that group of 20,000,000 you could expect 7,000 to start dialysis.

What would have happened before this health insurance reform? Here’s renal social worker extraordinaire Beth Witten on what happens today:
I get calls and emails all the time from pateints, family members, social workers, Networks, etc. trying to find ways to help uninsured or underinsured people who are US citizens or permanent legal residents pay for dialysis when dialysis clinics refuse to accept them unless they have coverage for dialysis. I’ve heard my social worker colleagues lament the time they have to spend on teleconferences explaining situations that can’t be fixed in the current health insurance system which denies coverage or charges premiums that are too high for people to pay. I’ve heard of providers donating money to AKF to get their patients premiums paid for EGHP (including COBRA) premiums so those providers can recoup many times what they’ve donated for as long as possible.
Does the new legislation address this issue as I think it does?

Where is the analysis from the KCP? From the KCC? I hear that maybe those with insurance through the exchanges would not be subject to MSP. One, if that is true it would be a good thing to advocate about but two, how could that be true? Many of the people in the new exchange could be expected to have not paid into Medicare - a self employed landscaper, for instance. Without any work quarters to qualify under the ESRD program it makes no sense to think that the exchange insurance would drop him due to illness. That would be a news worthy exception to how the bill has been described.

Right now the number one advocacy issue in the dialysis world is KCP’s call to push Congress to push CMS to pay more for oral meds if they’re going to be included in the expanded bundle. DPC, AKF and ANNA have versions of the Capwiz letter on their sites. DPC, NKF, RSN and AKF sent a letter cosigned by the four groups last week. None of the organizations acknowledge the language signed into law that directs the GAO to conduct a study. None of the organizations acknowledge the changes to Medicare Part D that will likely increase appropriate use of the oral drugs in question.

Together, these elements of the bill the President signed into law will make it much less risky for CMS to add oral meds at a later date. It’ll be less risky because CMS will be better able to judge the appropriate level of use and the cost of that level of use, if all Part B beneficiaries had access via dialysis. If it is less risky in the future, than it is riskier to proceed now. That is a very powerful message. Why isn’t that the suggested message?

Why are the CKD advocates proceeding with the messages they developed pre passage of HR 3590 the Patient Protection and Affordable Care Act? Why is there no analysis of the impact on CKD policy issues available from any of the CKD organizations interested in public policy?
It is ironic that as CMS works to address the calcium balance among people who use dialysis, that it is the organizations that advocate on our behalf that could really use the oral drugs without injectable equivalents.