PAN / Vasculitis Chat

DATE: October 17, 2010

Participants:

Ed Moderator: PAN Support Network Moderator
Aiken Hackett: Guest from the American College of Rheumatology
Leona: PAN Group Member
Tami: PAN Group Member
Peter: PAN Group Member

Ed Moderator:. We have Aiken Hackett with us tonight. She is going to talk about some very criticalissues going on in good old' DC. These are issues that have the potential to affect vasculitis as well as all rare disease patients. So with that, I'll intro Aiken. Glad you can be with us. And welcome Peter from Australia. Due to the limitations of the chat forum, we won't be able to give a huge amount of detail, but rather will direct readers of the transcript to visit the ACR website. There's just only so much to share in this type of forum. Aiken, before we get into the meat of things I need to make sure we don't ask you questions that are not your area. What topics do you not take...I mean Medicare questions?

Ahackett: I can address most legislative/regulatory issues affecting docs/patients...Stay away from insurance.

Ed Moderator: Do you have background with the ins and outs of Medicare in case someone has a
question?

Ahackett: Not really, but i could possibly answer the question. If not, i will just let you know.

Ed Moderator: no problem. And no medical or clinical questions.

Ahackett: Um, no! I am NOT a physician.

Ed Moderator: Me either! :-) And I don't play one on the Internet. :-) Okay, so first up. Aiken tell us what the ACR is, what it does, its mission.

Ahackett: ACR is the national org representing approximately 5500 rheumatologists and 1500 HPs The mission is to advance rheumatology . The college puts on its annual meeting for continual education as well as policy issues affecting rheumatologists is my area of expertise.

Ed Moderator: I see. And tell us about what you do? Your role. What are your job responsibilities at the ACR.

Ahackett: I am the ACRs Director of Government Affairs. In my department, we monitor federal legislation and regulations as well as mobilize our grassroots ‐‐ encouraging members and their patients
to engage in advocacy We work with Congress and federal agencies to ensure policies affecting rheumatologists and patients are brought to their attention and addressed.

Ed Moderator: Great. Essentially you let our lawmakers know what issues are key to rheumatologists ...and you also let them know how their bills AFFECT physicians. You are the voice for the collective rheum community.

Ahackett: Exactly! Yes!

Ed Moderator: Okay. Tell us about some of the "victories" you've had. By this I mean, rulings you had overturned, or new bills that were brought up. Something the ACR did successfully to make impact with D.C.

Ahackett: well, ACR has come a long way in the past 10 years regarding advocacy and having a voice in DC. Many of our victories come through our coalition work ... other patient and doctor organizations working together to improve reimbursement for things like DXA (bone density scans) that was included in Health care reform. As well, we collectively created a pediatric loan repayment program for specialists to improve the workforce shortages in PED specialties.

Ed Moderator: So tell us about some of the big "battles" you have going on right now.

Ahackett: Well, the number 1 issue for all physicians that greatly impacts the entire health care world is called "SGR". SGR is a formula created by Congress to reimburse Medicare. Congress realized early on that it is flawed, but has not "fixed" it per the request of the House of Medicine. Beginning in 2002, Medicare rates were cut 5.4%. This year, the scheduled cuts are 23.5% as of Dec 1 and another 6.5% on Jan 1. So physicians - all of them - will have Medicare payments reduced 30% if congress doesn’t act. Now, they have put "band aid" fixes on them each year since 2003 ... but the cuts have become too steep.

Ed Moderator: The cuts are deeper than any band aids or increases?

Ahackett: Three times this year the cuts were fixed retroactively, so physicians had their Medicare payments "held" for days and one time over 3 weeks. The band aid puts the rates back to 100.

Ahackett: This last "fix" there was a 2.2% update - so basically 102.2% ... but then, the cuts will occur and payments will go to 70%. So, because of the constant battle of the threat of these cuts ... many physicians have stopped accepting Medicare patients or limit the time spent with the patient creating a huge access to care - and could possibly compromise the quality of care provided. So ACR and the AMA - and the House of Medicine are working to ensure Congress fixes it before November 30 (deadline). However, congress will only be back in session for one week after the election prior to November 30.

Ed Moderator: Is it fair to say this whole issue has been "kicked down the road" so to speak by previous administrations? It just gets tossed like a hot potato to use another metaphor.

Ahackett: Oh yes. and the more they delay - the greater the cost.

Ahackett: Right now, it will cost upward of 300$ billion to fix. If they have fixed it in 2004, it would have cost approximately $46 billion. Spending money in DC is obviously a huge issue these days ...It is a nonpartisan issue. Congress knows its flawed. Both Republicans and Democrats agree (on that) but not how to pay for it ... So Ed, that is our biggest issue right now and one we have had to deal with every 2-6 months this year
alone.

Ed Moderator: This may be a simplistic question but why IS Medicare cut. I mean why is it seen as a program that gets the knife so fast.

Ahackett: It is really the flawed formula that forces these cuts. It is tied to the GDP ....too complicated to explain here

Ed Moderator: Essentially it doesn't realistically take in the higher costs of health care?

Ahackett: Correct. Congress failed to address this flawed formula in HCR.

Ed Moderator: How many patients are on Medicare. Approximately?

Ahackett: 43 million and private insurance ties their rates to Medicare rates ...

Ed Moderator: Does this issue have anything to do with recent healthcare legislation? The new healthcare laws or is it something as you say has been around.

Ahackett: This issue wasn’t included in HCR, but should have been and it wasn’t included because of the cost. Some speculate it was trying to keep the bill under $1 trillion.

Ed Moderator: So let's boil this down to the patient level because that's where the true interest at least in our group is at...

Ahackett: Congress tried to improve access to care, but forgot that patients can’t receive high quality care without doctors. Doctors need to be able to keep their practices open - they are businesses - and cutting one's payments 30% forces them to not accept patients. Some docs who spend 20 minutes with a patient, might spend less time with a patient now so they can see more and meet their overhead ... and make a profit. Some of them had stopped accepting new Medicare patients and a lot of patients with chronic conditions are on disability and Medicare.

Ed Moderator: I know that sounds like heresy to say a doctor's office has to be run like a business. I think this fact gets lost sometimes, Aiken. Doctors are also businessmen. They have to be.

Ahackett: exactly

Ed Moderator: Running a practice demands making sound business decisions.

Ahackett: That’s right. So, ACR mobilizes our members - and now patient advocacy orgs - to engage in the issue. Patients voices need to be heard. Congress wants to know the impact this is really having ... and hearing from the patient puts a face on this.

Ed Moderator: So let's go with this scenario: The doctor feels his patient has vasculitis or something much more complicated than he can handle.. At this point he needs to call in a specialist or send the patient to a place like Mayo or Hopkins. The specialist sees the patient to determine if he does indeed have vasculitis or a complicated illness. At this point in the situation it's critical the patient gets a good evaluation from the specialist.
The problem that is happening is that if the specialist isn't reimbursed for his time and testing it impacts the patient. The specialist may reach a point where he or she simply can't afford to take on consults. And he or she may be the only specialist in the area. Is this all plausible?

Ahackett: Yes, well the consult issue is a different from the SGR but you highlight the issue of elimination of consult codes quite well. SGR affects all physicians - PCPs and specialists - and all Medicare patients. But you are correct. another issue is the elimination of consultation codes.

Ahackett: Centers for Medicare and Medicaid Services eliminated consultation codes in January. Now, specialists who treat complex patients have had their reimbursements slashed in another way ... they aren’t fairly compensated for their time and expertise because CMS wanted to provide increases to other evaluation/mgmt codes that improve reimbursement for PCPSs.
So, ACR, AMA and 16 other specialties are urging Congressional action to reinstate these codes. Rheumatologists have seen a decrease in reimbursement 10-20% due to this policy change. Add this on top of SGR issue -- and it’s hard to be a specialists these days!Ahackett: They spend so much time trying to run their practice and it too affects patient care.

Ed Moderator: I see. Well, it's important for vasculitis patients to see what is coming down the road. All patients of course, but our focus here is on PAN.

Ahackett: Yes health care is changing. and we must all stay engaged to ensure no one is left behind.

Ed Moderator: So to wrap up our Q and A....it's one thing for the doctors to complain and sign a petition, but I wonder if that has as much impact as having the patients raise it to their legislators.

Ahackett: Yes. ACR actually takes patients to DC each year to talk to Congress about these issues. That is why it is great to have the ACR work with organizations such as PAN paired with rheumatologists and HPs, it makes a very effective team in relaying the issues.

Ed Moderator: I mean, to be honest, I've not heard a lot of sympathy for doctors of late. I have heard from people who say, ‘Oh they make enough money now’. You've heard this too?

Ahackett: Yes. docs are considered wealthy, but there is a large spectrum of what a physician makes and medical school bills, time, expertise, etc. We need to ensure there are adequate doctors in the next generation.

Ed Moderator: So what can average Joe PAN patient do to help ensure this issue gets on the radar of the next senator or congressman?

Ahackett: The easiest step is making a phone call to express one's concern about an issue. Or, joining us in DC for our Advocates for Arthritis conference to speak directly to your member of Congress.

Ed Moderator: When is the conference?

Ahackett: We hold it every Sept, so we just had it. ACR will cover the cost of our attendees - travel, hotel, etc. We'd love to have PAN and vasculitis patients participate.

Ed Moderator: The key to some extent really depends on patients too. Washington listens to constituents who have rare diseases and are affected.

Ahackett: These next 3-4 weeks before Nov 30 are critical ... a great time to get engaged in these efforts.

Ed Moderator: So let's open for a few questions anyone? Questions for Aiken?

Ed Moderator: It's interesting because Peter is from Australia. I wonder what you're thinking as we go
through this discussion Peter.

Ahackett: I am not familiar with Australia's health care system .... would be interesting.

Peter: It appears to be so complicated.

Ed Moderator: Peter, I do know that YOU know the importance of having a specialist involved! Your life literally depended on having specialists intervene to finally get a correct diagnosis.

Ahackett: I have heard dozens of horror stories about delaying correct diagnosis because patients did not see the appropriate specialists and if you don’t start treatment early, it makes things so much more
complicated/devastating.

Ed Moderator: Good lord, it is legend and lore in the PAN Community. How many patients went for so long because a specialist wasn't called in sooner.

Peter: We have "Medicare" for everybody and if we want a higher caliber of healthcare we take out private health insurance. In Australia we are all treated the same regardless of age or disability.

Ed Moderator: Tami, your question?

Tami: Is there some sort of guideline or legislation that says a patient on Medicare / Medicaid must receive the same level of care as a privately insured patient?

Ahackett: No. Medicare is obviously people over 65 and those on disability. I can’t speak for docs, but their insurance shouldn’t dictate treatment.

Tami: Wow!...that is sad to hear. I never thought to much about these issues until my daughter was
diagnosed.

Ahackett: some physicians don’t take Medicaid.

Tami: I mean, what is the likelihood of her being able to get private insurance with this a PAN diagnosis?

Tami: The only experience I have on this issue is with my Mom who, because of age, qualified for Medicare along with her membership with Kaiser Permanente. Everything seems so easy for her, medically speaking.

Ed Moderator: The new healthcare legislation forbids refusing coverage to pre-existing conditions. Right?

Ahackett: Yes. that is correct.

Leona: Here in USA if you can’t afford it ,you don’t get it.

Ed Moderator: Aiken, what do you like and not like about the new healthcare legislation?

Ahackett: Well, speaking for the college, there were a lot of good provisions included in it. But we did not take a position on it. It is very political.

Peter: Sorry Ed my doctor has appeared to talk to me and l unfortunately must leave this very interesting discussion.

Ed Moderator: wonderful to have you here Peter. God bless.

Ahackett: Thanks Peter!

Ed Moderator: I'll have to be wrapping up. Aiken has been so kind to be with us.

Leona: Thank you for a great chat.

Peter: bye all and thank you Aitken.

Ahackett: thanks for having me. I enjoyed having the chance to bring this issue to the attention of your
organization.


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