Keep Yourself Informed
The Mass State House Bill 585 is a PRIORITY
The Epilepsy Foundation MA, RI, NH, & ME testified before the Joint Committee on Public Health on Tuesday, October 4, 2011. Affiliate staff will be meeting with the House leadership and we welcome input from our constituents.
- Have you or anyone you know experienced a breakthrough seizure after your anti-epileptic medication was changed?
- Did the pharmacist tell you if he/she switched the medication?
- Did you have time to discuss this change with your doctor?
- Did your pharmacist notify your doctor about the change of your medication?
If you answered "yes" to any of these questions and live in MA, please submit your story to Lynn Dann via email or send in your letter (printed or typed please) to 540 Gallivan Blvd. Boston, MA 02124. It would also be helpful if you can submit an advocacy letter to your House of Representatives supporting this bill. A version of the letter is available here for your use.
Click here for a letter from Leslie G. Brody, CEO & President of our affiliate, giving advice about drafting and submitting the letter to your Representative.
We are anticipating similar legislation to be filed in Maine, so check back for further information regarding this important issue.
House Resolution 298 Constituent Letters
House Resolution 298 shows congressional support for epilepsy awareness programs that already exist in communities and federal agencies. The Epilepsy Foundation has composed letter templates specific to each state, which you may send to your Representative to urge their support for the resolution. Click on the appropriate link below to access your state's letter template in Microsoft Word format.
EFMRI Testifies for all inclusive Preferred Drug
List in New Hampshire
..."The Epilepsy Foundation has been and will continue to be opposed to cost containment policies that limit the access of patients to anti-epileptic drugs. Currently the FDA allows for a broad therapeutic range to exist within and between medications, generic to generic, brand name to brand name and brand to generic. The current method used for patients when prescribing anticonvulsant drugs can be, more often than not, trial and error; meaning frequent prescription changes and or mixing medications while observing blood levels and side effects to ensure the proper dosages to control a patient's seizures. By limiting the drugs available to doctors for prescription, the patien t is put in the position of having a controllable condition that is left unpredictable by restrictive drug formularies...."
Advocacy Training - Handouts
AG Coakley Reaches Settlement with Express Scripts
As part of a multistate agreeement, Express Scripts is to pay $9.3 million to states and prohibited from engaging in drug switching.
May 27, 2008
BOSTON - Today, Massachusetts Attorney General Martha Coakley's Office, together with 28 other state Attorneys General, entered into a settlement with Express Scripts Inc., one of the nation's largest pharmacy benefits management (PBM) companies, resolving claims that its drug switching programs are unfair or deceptive under the Massachusetts Consumer Protection Act.
"This settlement with Express Scripts is part of our office's continued efforts to introduce transparency and fairness to the PBM industry," said Attorney General Coakley. "Through the work of the State Attorneys General, first with Medco, then Caremark and now Express Scripts, we have changed how these companies treat patients and doctors when they ask to change their prescription medications-those requests now include full information on costs savings and the reasons for the proposed switch."
As part of the Assurance of Voluntary Compliance, filed today in Suffolk Superior Court, Express Scripts has agreed to make clear and conspicuous disclosures about its business practices to its consumers, doctors and employers, including its policies on initiating any drug interchanges between one brand name drug to another brand name drug. Express Scripts also will pay $9.3 million to the States and up to $200,000 in reimbursement to patients who incurred expenses related to certain switches between cholesterol-controlling drugs called statins. Massachusetts will receive a total of more than $255,000 from this settlement, including $65,000 in costs and fees and the balance to be used to benefit low-income, disabled or elderly consumers of prescription medications, to promote lower drug costs for state residents, to educate consumers concerning the cost differences among medications.
Today's settlement asserts that Express Scripts engaged in deceptive business practices by not always acting in a manner consistent with its representations to consumers and employers about its PBM services. Specifically, Express Scripts may have overstated the cost benefits of switching to certain brand name medicines, which may have resulted in additional medical costs for consumers. Additionally, Express Scripts did not clearly disclose to their clients plans that rebates accrued from the drug switching process would be earned by Express Scripts.
The settlement generally prohibits Express Scripts from soliciting drug switches when:
" The net drug cost of the proposed drug exceeds the net drug cost of the originally prescribed drug;
" The originally prescribed drug has a generic equivalent and the proposed drug does not;
" The originally prescribed drug's patent is expected to expire within six months; or
" The patient was switched from a similar drug within the last two years.
Additionally, the settlement requires Express Scripts to:
" Inform patients and prescribers what effect a drug switch will have on a patient's co-payment;
" Inform prescribers of Express Scripts' financial incentives for certain drug switches;
" Inform prescribers of material differences in side effects or efficacy between prescribed drugs and proposed drugs;
" Reimburse patients for out-of-pocket expenses for drug switch-related health care costs and notify patients and prescribers that such reimbursement is available;
" Obtain express, verifiable authorization from the prescriber for all drug switches;
" Inform patients that they may decline a drug switch and the conditions for receiving the originally prescribed drug;
" Monitor the effects of drug switches on the health of patients;
" Adopt a certain code of ethics and professional standards;
" Refrain from making any claims of savings for a drug switch to patients or prescribers unless Express Scripts can substantiate the claim; and
" Inform prescribers that visits by Express Scripts' clinical consultants and promotional materials sent to prescribers are funded by pharmaceutical manufacturers, if that is the case.
PBMs enter into contracts with employer and governmental health plans to process prescription drug claims for drugs provided to patients enrolled in those health plans; negotiate with drug companies to obtain discounts; negotiate discounts with participating retail pharmacies to provide dispensing services; and dispense drugs to patients through PBM-owned mail order pharmacies. In the thirty years since the first PBMs appeared, their services have evolved to include complex rebate programs, pharmacy networks, and drug utilization reviews.
Today's resolution marks the third settlement that the states have entered into with pharmaceutical benefits managers. In 2004, a group of 20 of states settled with Medco Health Solutions, Inc., the world's largest pharmaceutical benefits manager. In February of this year, a group of 29 states settled with Caremark Rx, LLC, another of the world's largest pharmaceutical benefits managers.
Joining Massachusetts in today's settlement are: Arizona, Arkansas, California, Connecticut, Delaware, District of Columbia, Florida, Illinois, Iowa, Louisiana, Maryland, Michigan, Mississippi, Missouri, Montana, Nevada, New Mexico, North Carolina, Ohio, Oregon, Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, Vermont, Virginia, and Washington.
The matter was handled by Assistant Attorney General Christopher Barry-Smith, Chief of Attorney General Coakley's Consumer Protection Division.
-Taken from AG Press Release
Costco Magazine Highlights Med Dangers
-except from full article, found here.
MA Senate Bill 1296
"A pharmacist may not interchange an anti-epileptic drug or formulation of an anti-epileptic drug, brand or generic, for the treatment of seizures (epilepsy) without prior notification of and the signed informed consent of such interchange from the prescribing physician and patient, or patient's parent, legal guardian or spouse of such person."
The American Academy of Neurology states: "Massachusetts Senate Bill 1296 would prevent pharmacists from substituting one AED for another without the informed consent of the prescribing doctor and patient. Substitution of AEDs can have devastating consequences. This bill would protect Massachusetts physicians’ autonomy to make treatment decisions for their patients with a seizure disorder."
Senator Moore sponsored the bill in the summer of 2007. The bill needs our help and support to pass. Please let your member of Congress know that you support full patient, doctor and pharmaceutical disclosure.
Seizure disorders are inherently unpredictable and for many their causes unknown. Individuals living with epilepsy confront the daily challenges associated with constant flux in their seizures. Patients must rely on their physician and the prescription medication that work for them. Upsetting this delicate balance is to say, at the very least, dangerous.
Please visit the Advocacy Documents Page to read more information on 1296, including talking points and legislative testimony.
For more information, please contact Leslie G. Brody at 617-506-6041 ext 14 or by email at firstname.lastname@example.org.
Speak Out Speak Up
Joining the National Epilepsy Foundation's Speak Up, Speak Out campaign is a great way to get the latest information about federal and state issues that affect people with epilepsy and their families. It also provides a convenient and simple way for you to contact your legislators to educate them about epilepsy and to tell them how the decisions they make can have an impact on you.
The Epilepsy Foundation Massachusetts, Rhode Island, New Hampshire & Maine has an active grassroots advocacy network where consumers effect change in the social service delivery system at the local, state, and national levels. Development of services are provided by individual advocacy and systems advocacy.
Your involvement as an individual with epilepsy, parent, family member or volunteer is essential to an effective advocacy program. The Federal Congress and your local state government often responds most positively to personal stories and requests.
The goal of grassroots advocacy is to develop a good relationship with your elected officials. If they know you, they will know your issues.
Are you interested in joining our network? Please visit the grassroots network registration page.
If you join the grassroots advocacy network you will receive action alerts and bulletins on advocacy activities on behalf of people with epilepsy.
At the Epilepsy Foundation Massachusetts, Rhode Island, New Hampshire and Maine we believe that by raising the level of awareness and teaching the general public about epilepsy, we can help reduce the fear and stigma associated with the disorder. If you are interested in advocating for epilepsy, contact us at (617) 506-6041.