Health Debt Bill Passes Committee
by David Gorn
April 25, 2012 - Melanie Rowen, a woman with multiple sclerosis living in San Francisco, appeared before the Assembly Committee on Health yesterday to talk about money -- or rather, lack of it.
When she first found out she had multiple sclerosis, Rowen had health care insurance but her medication was still expensive. "My insurance plan required me to pay 30% of it," Rowen said. "I couldn't afford it, but I put it on credit cards." As she watched her disease progress, she saw her bank account drain away and her health care debt pile up.
Assembly member Fiona Ma (D-San Francisco) hopes to prevent similar scenarios with AB 1800 which would establish a limit on annual out-of-pocket expenses for prescription medications for insured Californians.
"It is unconscionable to make people choose between the medical medications they need and food for their children," Ma said.
"If AB 1800 were in effect now," Rowen said, "I'd be spending $6,000 a year and no more, rather than this limitless amount. It's just a bottomless pit, in a market where we have no bargaining power at all."
Nick Louizos, director of legislative affairs for the California Association of Health Plans, said there were several troubling elements to the bill.
For one thing, "it turns the Independent Medical Review process on its head," Louizos said. "There are amendments on the table, but we continue to be concerned about this part of the bill."
And, he said, when small-group insurance doesn't fully cover some medications and patients get them anyway, that could pump up premium prices for large employers.
"This bill goes beyond the federal [health care reform] law in key ways," he said. "As this applies to large employers, it will increase premiums, and we don't think it's appropriate to apply this to large employers."
The bill passed the Assembly Committee on Health with 12 aye votes, and now heads to Appropriations.
(Source:www.californiahealthline.org)
Pre-Existing Condition Reform Passes Committee
by David Gorn
April 19, 2012 - The Senate Committee on Health yesterday passed SB 961 by Ed Hernandez (D-West Covina), which would change the individual health insurance market in California, in part by halting insurer denials based on pre-existing conditions. It is similar to a bill -- AB 1461 by Bill Monning (D-Carmel) -- approved by the Assembly health committee one day earlier.
Both measures are designed to conform to the federal Affordable Care Act, Hernandez said, in advance of many other states.
"While some of you may not support the Affordable Care Act, it is currently the law of the land," Hernandez said yesterday in introducing the measure. "And California continues to serve as a model for the rest of the nation."
About two million Californians currently are covered under individual plans, Hernandez said. "While California has a long history of consumer protection in the group markets, that has not been the case for the individual market," he said. "This will affect plans both inside and outside the exchange. We have been working closely with Assembly member Monning as we move forward to reform the individual market."
Opposition to the bill was mild. "We have an oppose-unless-amended position on the bill," according to Nick Louizos, director of legislative affairs for the California Association of Health Plans. "I would like to say, it has been an open and fair process thus far. And generally our industry has not opposed bills to conform with ACA law."
But insurers have a problem with a community rating system in the bill, Louizos said, if it is not tied to an individual mandate, which is currently being debated in the Supreme Court.
"States that have enacted similar legislation have seen negative impacts to their markets," Louizos said. "If reform is going to succeed, healthy people have to buy coverage." And that would be threatened if the Supreme Court invalidates the individual mandate, he said.
The bill was approved on a 6-2 vote.
(Source:www.californiahealthline.org)
Ask the CA Governor to sign AB 395 into law!
AB 395, the bill that will mandate newborn screening for Severe Combined Immune Deficiency in the state of California, is currently on the Governor's desk. Governor Brown sits before 600 bills that he will either veto or sign by October 9th.
On the Governor's website (please see link below), there is an opportunity for all of you, as constituents to write to him and specifically select AB 395/Newborn Screening and urge him to sign our bill into law.
http://gov.ca.gov/m_contact.php
CCS Demonstration Pilots and AB 301
AB 301/Pan will be on its way to the Governor’s desk shortly. AB 301, supported by HCC, will extend the “CCS Carve Out” from most Medi-Cal Managed Care Plans in CA until January 1, 2016. We have supported similar measures in past years.
CCS Demonstration Pilots:
Meanwhile, the State of CA is moving forward with a limited number of CCS Demonstration Pilots. Those interested in submitting CCS Pilots in CA were to have submitted proposals to the State by the end of July 2011. The State is now reviewing those confidential proposals and the CCS Demonstration Pilots should be selected soon. Pilots selected are supposed to begin operating January 1, 2012, although that date could change.
To learn more about those pilots go to: www.dhcs.ca.gov, on the left hand side of that web page under Quick Links click on “Current Medi-Cal Procurements”, once on that page scroll down to the middle of the page and click on “CCS Demonstration Projects” for more information. We have no idea how patients with Hemophilia will be cared for under any CCS Pilot and it will be in the best interest of patients to link up with the organizers of each CCS Pilot once they are selected. We do understand that current CCS Standards must be followed in each of the pilots/demonstration projects.
(Source: Hemophilia Council of California's Advocacy Update, Volume III, Issue 3, September 2011)
URGENT action needed for newborns in California! Write Senators Kehoe and Steinberg today!
Legislation has been introduced in California that would authorize the addition of Severe Combined Immunodeficiency Disease (SCID) to the list of genetic diseases and disorders screened by the California Newborn Screening Program.
SCID (also known as the Bubble Boy disease) is a primary immunodeficiency disease that is a pediatric emergency. Affected infants lack T lymphocytes, the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive.
In the first nine months of a pilot program screening for SCID in California, 358,000 babies have been screened and 11 newborns have been identified and confirmed as having SCID as a result! All of these babies will now have the opportunity for early treatment and the chance of a normal, healthy life because they had early detection.
AB 395 Newborn Screening Program, if passed, would literally save the lives of infants in California just like the 11 babies already identified through SCID screening.
However, this legislation is in immediate danger! AB 395 has been moved on to the Suspense File from the Senate Appropriations Committee after successfully passing the Assembly Chamber. If this legislation does not make it off the Suspense File next week (week of 8/21/11), the bill will die!
Please click “Take Action” to send letters to Senator Kehoe, Chair of the Appropriations Committee and Senate President pro Tem Darrell Steinberg asking them to move AB 396 off the Senate Suspense file!
Take action!Governor Jay Nixon signs HB 552 into law
This bill requires the Missouri State Board of Pharmacy to establish rules governing the standard of care for pharmacies dispensing blood clotting therapies. Congratulations to the Missouri hemophilia community for a job well done.
Ask your Senators and Representative to Support Medicare IVIG Access! Today!
WE NEED YOUR HELP TODAY!! PLEASE COMPLETE THE ACTION ALERT TO ASK YOUR REPRESENTATIVE AND SENATORS TO CO-SPONSOR HR 1845/ S 960!!
HR 1845/ S 960 establishes a Medicare demonstration project that would enroll up to 4,000 Medicare beneficiaries who are patients with primary immunodeficiency diseases (PIDD) and allow for payment for IVIG therapy in the home setting. While Medicare will pay for immunoglobulin (IgG) in the home setting, current law forbids Medicare from reimbursing for nursing services and other items necessary for infusing in the home making the current benefit "hollow" and inaccessible to most Medicare beneficiaries.
The bill also requires the Department of Health and Human Services (HHS) to analyze and issue a report to Congress regarding other IVIG problem access issues which have become obstacles to immunoglobulin therapy to all IVIG patients whether they be patients with PIDD or other disease and chronic conditions.
Because of questions regarding the cost of a fully funded IVIG home infusion benefit, the demonstration project will provide the necessary data to determine the actual cost of IVIG home infusion and at the same time pay for IVIG home infusion for Medicare beneficiaries during the project's 3 year duration. The benefit to the PIDD community who are on Medicare will be that home infusion services will be available where none exists now.
We urge you to contact your Representative and Senators using the Action Alert and ask them to cosponsor and advocate for HR 1845/ S 960. Your emails count and matter. Please click on this link to take you to Action Alert
HHS to Reduce Premiums, Make it Easier for Americans with Pre-Existing Conditions to Get Health Insurance
The U.S. Department of Health and Human Services (HHS) today announced new steps to reduce premiums and make it easier for Americans to enroll in the Pre-Existing Condition Insurance Plan. Premiums for the Federally-administered Pre-Existing Condition Insurance Plan (PCIP) will drop as much as 40 percent in 18 States, and eligibility standards will be eased in 23 States and the District of Columbia to ensure that more Americans with pre-existing conditions have access to affordable health insurance. The Pre-Existing Condition Insurance Plan was created under the Affordable Care Act and serves as a bridge to 2014 when insurers will no longer be allowed to deny coverage to people with any pre-existing condition, like cancer, diabetes, and asthma.
Under the changes announced today, PCIP premiums will drop as much as 40 percent in 18 States where the Federally-administered PCIP operates. These premium decreases help bring PCIP premiums closer to the rates in each State’s individual insurance market; in the six States where PCIP premiums were already well-aligned with State premiums, premiums will remain the same.
To further enhance the program, beginning this fall, HHS will begin paying agents and brokers for successfully connecting eligible people with the PCIP program. HHS is also working with insurers to notify people about the PCIP option in their State when their application for health insurance is denied.
To find a chart showing changes to PCIP premiums in the States with Federally-administered PCIP programs, visit www.HealthCare.gov/news/factsheets/pcip05312011a.html.
For more information, including eligibility, plan benefits and rates, as well as information on how to apply, visit www.pcip.gov and click on “Find Your State.” Then select your State from a map of the United States or from the drop-down menu. The PCIP Call Center is open from 8 a.m. to 11 p.m. Eastern Time. Call toll-free 1-866-717-5826 (TTY 1-866-561-1604).
(Source: hemophilia.org)
Hemophilia Federal Funding Update
Congress will be voting this week on legislation to fund the federal government for the remainder of fiscal year 2011, which ends September 30, 2011. The Senate, House of Representatives, and White House agreed to a total budget of $1.049 trillion, which represents a total reduction in spending of nearly $40 billion as compared to fiscal year 2010. The Department of Health and Human Services will face a reduction of $3.4 billion, mostly from the reduction in spending or elimination of certain programs. Neither the MCH or CDC Hemophilia programs were targeted for a reduction in this budget, but the budget does include a 0.2% across-the-board reduction in spending for all non-defense discretionary programs, which could impact funding for Hemophilia activities.
The across-the-board cut will require each federal agency to cut 0.2% of their budget. We do not yet know how agencies will distribute this cut across various programs. Hemophilia Treatment Centers receive $4.9 million through the Maternal & Child Health Block Grant at the Health Resources & Services Administration, and $7 million through the Centers for Disease Control & Prevention Division of Blood Disorders. The agencies have flexibility in determining whether all programs are reduced by the same percentage or if some will be reduced more than others. How the cuts will affect hemophilia treatment centers has yet to be determined, but NHF is working with policy makers to ensure minimum impact.
The House and Senate are expected to vote on the legislation on Friday, and then immediately send the bill to the President for his signature. The current short-term funding measure expires at midnight on Friday.
A press release regarding the PCIP changes can be found here: www.hhs.gov/news/
If you have any questions, please contact the CMS Office of Legislation at 202-690-8220. Thank you.
(Source:U.S. House and Senate Notification, Tuesday, May 31, 2011)
Support Letters Needed by March 15th for AB 389/Mitchell
Please send your letters of support as soon as possible for AB 389/Mitchell. This is the Standards Bill being sponsored by HCC. Attached is our letter which you may use as a template. Please get letters in prior to March 15th as the bill will be heard in Assembly Business & Professions Committee on March 22nd. Thanks!
Click here to download letter.
House of Representatives Votes to Repeal Health Care Reform
On Wednesday, January 19, the U.S. House of Representatives passed legislation to repeal the Affordable Care Act, the health care reform legislation enacted last year to transform our nation's health system. The final vote tally for the bill, H.R. 2, was 245-189, with three Democrats joining Republicans in voting for its passage. While it is highly unlikely this bill will be considered by the Senate, Wednesday's vote signifies the House's intent to undo health reform.
Repealing the Affordable Care Act would remove policies that are already helping people with hemophilia and other bleeding disorders, such as the:
- Elimination of lifetime caps and restricted annual limits
- Elimination of pre-existing exclusion for children
- Elimination of rescissions
- Extension of coverage for young adults up to age 26
These and other reforms are protecting patients and increasing access to affordable health care. We need your help to ensure they are not taken away. Your voice is important! We encourage you to express your opposition to any future attempts to repeal this important health care achievement. You can let your Representatives know how health reform has impacted your life by coming to NHF's Washington Days, February 16-18, and meeting with your legislators in Washington, DC. If you are unable to attend, you can still learn how to contact your legislators by visiting the NHF Take Action Center.
SB 971/Pavley Vetoed
We are sad to report that Governor Schwarzenegger vetoed SB 971/Pavley.
SB 971 Passed the Assembly 68-0 and We Still Need Your Help!
The good news is that SB 971 passed the Assembly 68-0. We still have received no "no" votes and only have one more procedural vote in the Senate before our bill will go to the Governor.
However, we need to prove to the Governor's office that there is a real problem that the bill is going to solve for our community and therefore the bill is truly necessary. Just because it has been so well supported in the legislature doesn't mean that this Governor might not veto the bill.
WE NEED YOUR HELP!
Please send us YOUR STORIES - tell us about the problems you or others have had with not having proper access to factor or having it not handled properly. We don't need to use names, we just need concrete examples.
For example:
Has your factor ever not been properly delivered? or stored (as a result of the delivery mechanism)?
Have you ever had trouble having access to sharps containers?
What about access issues to the type of factor that works best for you?
We also need you to SEND LETTERS:
Feel free to adapt the letter of support bellow (most of it can remain the same if you like - just change the personal parts to tell your own story). If you prefer to write your own letter that is great too. The attached fact sheet will help.
Letters can be faxed to Senator Pavley's office at (916) 324-4823. They can also be submitted directly to the Governor's office (via fax) at 916-558-3160; but please make sure Senator Pavley also gets a copy.
Forward this onto others in the community. We need everyone's help to get this across the finish line and ensure that all patients in CA are protected with these standards of service.
Robyn Ireland
Hemophilia Council of California
Click here to download letter.
Click here to download factsheet.
SB 971 Passed Assembly Floor 68-0
I am pleased to report that SB 971/Pavley passed the Assembly Floor this afternoon on a 68-0 bipartisan vote!
We had Assembly Health Chair Bill Monning (Democrat-Santa Cruz) present the bill and there was no debate. We had Audra Strickland (Republican-Camarillo) and Nathan Fletcher (Republican-San Diego) poised to assist us if we got into trouble!
Thanks to HCC Board Member Lynne Carey and PPTA advocate David Gonzalez for assisting me w/ Strickland and Fletcher.
Thanks to CSLB for helping HCC w/ the DCA and Agency!
We now move to the Senate Floor for "concurrence of Assembly Amendments" then on to the Governor's desk!
Thanks, again, for all of your help and support!
Terri
SB 971/Pavley Passes!
HCC Board and Friends and Supporters of SB 971/Pavley --
I write to let you know that SB 971/Pavley passed the Assembly Business & Professions Committee today with unanimous, bipartisan support!
Thanks to Tony Maynard for again being our "star" witness. Thanks to Sean Hubbert, Bill Carroll, Fred Noteware, Michael Arnold and David Gonzalez for your support and for being there for the long morning hearing which continued into this afternoon!
As reported last week, our only remaining opposition to the bill is the Dept. of Consumer Affairs. They simply say that they don't see a need for the bill (but offer no amendments etc). We were able to highlight the need for standards in our testimony today. We also will be meeting with the higher ups at Dept. of Consumer Affairs with Senator Pavley's office very soon.
Assuming they go on Legislative Recess in July, we will be heard next in Assembly Appropriations Committee in August. After that we would be heard on the Assembly Floor then back to the Senate Floor for "concurrence of Assembly amendments" later in August.
We are getting closer to a victory! Thanks, again, for all of your support! Terri (HCC Legislative Advocate)
SB 971/Pavley Passes A. Health Today 19-0!
HCC Board and Friends and Supporters of SB 971/Pavley --
I write to let everyone know that SB 971/Pavley passed the Assembly Health Committee today on a 19-0 bipartisan vote!
We officially removed the opposition of the CA Hospital Association, CA Children's Hospital Association and the CA Pharmacist Association over a week ago and just this morning removed Kaiser's opposition!
Kaiser wanted a modification to the medical waste removal section of the bill and some liability protection language They also wanted to remove the intent section of the bill referring to HTC's as a model of care.
The HCC Board said "no" to removing the HTC intent section and wanted to ensure that sharps containers would be provided with instructions on their usage. This is the language everyone agreed to:
Page 7, Line 29, replace (o) with the paragraph below:
(o) Provide the patient with a sharps container and instructions as to how to dispose of the medical waste sharps, however the provider of blood clotting products shall not be liable for any acts or omissions of the patient in the handling and disposal of medical waste.
This language was discussed today in committee and the CA Hospital Assoc and Kaiser told the committee that they are now "neutral". They thanked us and Senator Pavley and her staff.
The Dept. of Consumer Affairs testified in opposition as they believe the bill is not needed. Senator Pavley told the committee that recently pharmacies had left clotting factor on patient doorsteps and so there is a definite need for the bill. HCC believes that there should be standards in place in state law so that the public pay patients and the private pay patients will have similar standards in place in CA.
We will be heard next in Assembly Business & Professions Committee next Tuesday morning. The amendments discussed above will be formally adopted in that committee.
Thanks to all of our supporters! CSL Behring (Bill and Fred), Herndon Pharmacy (Michael), PPTA (David), Sean Hubbert, and Lynne Carey were all at the hearing.
Yvette Bryant and Tony Maynard testified w/ me for HCC and both did a terrific job! Yvette is a constituent of Assembly Health Vice Chair Nathan Fletcher (Rep-San Diego/Poway). Fletcher was presiding at the hearing when our bill came up!
We will keep fighting for this important standards bill! Terri (HCC Legislative Advocate)
The California Standards of Service Bill moves to the State Assembly.
On June 2, the California Senate has passed SB 971 the Standards of Service for Providers of Blood Clotting Products for Home Use Act with no opposition (34-0). Securing bi-partisan support this bill moves to the Assembly with significant momentum. Although there is still some opposition, the bill's author, Senator Pavley, and the bill's sponsor, Hemophilia Council of California, are working hard to resolve these issues. If you're in California, call your Assembly Member's office ask to ask for support of SB 971.
To see the bill: Read SB 971.
Good News from Maryland!
A bill to guarantee insurance coverage for hemophilia care and access to Hemophilia Treatment Centers is being considered in Maryland. If you have friends or family there, please ask them to contact their State Senators to support Senate Bill 908 (aka SB 908) and their State House Representatives to support House Bill (aka HB 1127).
State & National Advocacy Groups Push for Groundbreaking Rx Reform Measures
Patients denied access to lifesaving medications urge passage of Nebraska bills at Feb. 16 hearing
More than a dozen state and national advocacy groups have joined Nebraska patients and healthcare providers to urge passage of two precedent-setting prescription protection bills. These laws would be the first in the nation to protect patients and their healthcare providers against unfair and restrictive insurer prescription practices. Their voices will be heard at a hearing 1:30 p.m. Tuesday, Feb. 16. Prior to the hearing that day, patients who can no longer afford or gain access to lifesaving medications will share their experiences at a rally and news conference at the State Capitol.
LB 1017 would combat restrictive insurance co-payments by ensuring that all health policies in the state include reasonable prescription drug benefits and limit the amount patients have to pay out-of-pocket for medicines their health providers prescribe. LB 1088 addresses the prevalent practice of patients being encouraged to switch to prescriptions that are similar to– but not the therapeutic equivalent of– the prescriptions their health providers ordered. Known as therapeutic substitution, the practice takes patients off medicines that work well for them and switches them to different medications that are less expensive, but not necessarily as safe or effective. For many patients, including those who will speak at the Feb. 16 news conference, no medically equivalent substitutes exist for their medications so they are forced to pay full price for their prescriptions or go without.
WHAT: News Conference in Support of Prescription Reform Bills LB 1017 and LB 1088.
WHEN: 11 a.m. – noon CT, Tuesday, Feb. 16, 2010.
WHERE: State Capitol Building, Room 1200, Lincoln, Neb.
[Note: Hearing will begin at 1:30 p.m. in room 1507.]
WHO: Alliance for Plasma Therapies; Local Patients and Advocacy Groups. Speakers will include:
- Sen. Abbie Cornett, who introduced both bills, and has heard from Nebraska patients who can no longer afford, or in some cases even obtain, the therapy they need.
- Michelle Vogel, Executive Director, Alliance for Plasma Therapies.
- Heather Overton, an epilepsy patient who has been forced to sue her insurer to obtain the medicine she needs to prevent seizures that routinely send her to the hospital.
- Polly Negrete, a former nurse and hospital manager, who has primary immune deficiency disease and motor neuron disorder. At one time, she paid $10,000 each year for just one medication and still must pay hundreds each month out-of-pocket despite being on disability.
- Lynette Anthony, an Omaha worker, whose insurer abruptly switched medication needed to control a serious skin disease from one co-pay tier to another. Instead of being 90 percent covered, she now pays $300-$400 a month for treatment.
- Carl Clark, president of the Nebraska Chapter of the National Hemophilia Foundation. His son, who has hemophilia, has seen his drug co-pays rise from $35 to more than $100 for medications needed to fight Hepatitis C acquired from a contaminated blood-clotting product.
NHF Call For Nominations
(Download following as PDF)
