WHY STATES MATTER?

THE TARRYTOWN MEETINGS (JULY 25-27 2011)THE TARRYTOWN MEETINGS (JULY 25-27 2011)TARRYTOWN, NYTARRYTOWN, NY

Former National Director of State Affairs, Hemophilia Federation of America

Former Director of Advocacy, New England Hemophilia Association

Former PAC Director, National Association of Social Workers, Vermont Chapter

Former Legislative Fellow, NY State Senate (2001-02)

Divided Government is gridlock, Washington is Gridlocked, GOP House and SCOTUS, Dems control Administrative State (Presidency )and US Senate

Politics is war by other means and always been

Winning is defined by the maintenance and preservation of political power

Political Power is broken down into two clusters: soft power (influence) and hard power the ability to impose your politics on others in spite of their interests and concerns

ORGANIZE LIKE THE FUTURE DEPENDS ON

IT !!!

There are MANY, MANY, MANY types of organizing but for our purposes we are focusing on two models today: they are:

LEGISLATIVEPUBLIC EDUCATION

(institution-building)

GINA REVISITEDGINA REVISITED

Our children will recognize GINA as the Federal legislation which acknowledge that Genetic Bias is actionable as a matter of law.

GINA was only made possible as a result of multiple actions at the State level around the country

In retrospect, these state actions served to form a political consensus

VERMONT and MASSACHUSETTS

THE MASSACHUSETTS GENETIC BILL OF

RIGHTS (2011)

BACKGROUND: The Massachusetts

Genetic Bill of Rights was critically

important for a variety of reasons- chief

amongst them is location; Massachusetts

is one of the hubs of research and

development for the life sciences and

biotechnology industries.

ONE IN SIX JOBS IN THE CITY OF BOSTON IS DIRECTLY TIED TO THE HEALTHCARE

INDUSTRY

Major employers in Boston metro area include: Hospitals (MGH, Beth Israel, Mass Eye + Ear, Leahy Clinic), Harvard, MIT, not to mention countless biobankers and medical device makers

ELEMENTS PROPOSED IN SB 1070 THE

MASSACHUSETTS GENETIC BILL OF RIGHTS (2011)

1.1. ESTABLISHES PROPERTY RIGHTS FOR INDIVIDUALS ESTABLISHES PROPERTY RIGHTS FOR INDIVIDUALS OVER THEIR OWN GENETIC MATERIALOVER THEIR OWN GENETIC MATERIAL

2.2. ESTABLISHES THAT ONE’S GENETIC INFORMATION ESTABLISHES THAT ONE’S GENETIC INFORMATION IS INTEGRAL TO ONE’S SELF AND THUS MUST BE IS INTEGRAL TO ONE’S SELF AND THUS MUST BE PROTECTED UNDER THE MASSACHUSETTS IDENTITY PROTECTED UNDER THE MASSACHUSETTS IDENTITY THEFT STATUTETHEFT STATUTE

3.3. REQUIRES ALL PARTIES HANDLING GENETIC REQUIRES ALL PARTIES HANDLING GENETIC MATERIAL COMPLY WITH THE FEDERAL CLIA MATERIAL COMPLY WITH THE FEDERAL CLIA GUIDELINESGUIDELINES

4.4. PROHIBITS USE OF GENETIC INFORMATION IN PROHIBITS USE OF GENETIC INFORMATION IN UNDERWRITING AUTO, LIFE, LONG-TERM CARE AND UNDERWRITING AUTO, LIFE, LONG-TERM CARE AND DISABILITY INSURANCE AND HOME LOANS DISABILITY INSURANCE AND HOME LOANS

LEGISLATIVE HEARING HELD BEFORE LEGISLATIVE HEARING HELD BEFORE JOINT PUBLICHEALTH COMMITTEE IN APRIL JOINT PUBLICHEALTH COMMITTEE IN APRIL 2011, BILL CURRENTLY UNDER REVIEW 2011, BILL CURRENTLY UNDER REVIEW

From a Genetic Bill of Rights to

the Most important non-

binding legislative effort in ages

•Unlike Massachusetts, the political climate is in general more favorable to our message, Vermont is not a Research and Development center like Greater Boston.

For example, The Vermont GBR proposed was intended to be much more ambitious than the Massachusetts legislation. It includes all of the elements of the MA bill and recognized that the mapped genome was the product of a public/private partnership in which the state had an ownership interest

Our Model bill from MA became principle source for creation of the VT proposal-

Our legislative bill drafter was largely unfamiliar with the area of law we were addressing (this is NOT unusual) but in her effort to “tweak the bill she inadvertently created significant technical problems…

We also were confronting the bill filing deadline, most statehouses have a legislative drop dead date and they differ from capital to capital

IMPORTANT NOTE: Washington DC is to Strasbourg as Boston or

Sacramento is to Prague and London

Due to technical problems the legislation was compromised, after

consultation with our lobbyist and bill sponsor, we decided it was most

appropriate to consider other approaches …

42 House (Co)Sponsors – Passed Unanimously (Acclamation)

Declared 4.25.11 “Genetic Equity Awareness Day” in VT

Recognizes all Vermonters enjoy an inherent right to privacy (Vermont is one of 40+ states with no EXPRESSED right to privacy as a matter of law)

Recognizes one’s genetic makeup represents a unique expression of an individual’s personhood

Recognizes that one’s genetic information and material are the product of the individual whom yielded them

States that no person shall be denied access to any public accommodation under Vermont law

States that the HUMAN GENOME PROJECT was the product of a public/private partnership and that VT would take reasonable efforts to safeguard the public’s interest in the mapped genome

HR 9 is not binding but got 42 members on the record, the education process was invaluable and served to build for a future VT effort. The resolution itself is a statement of values. Members of the VT House are now on the record

LegislationLaws

StateCountyMunicipalBallot Measure

(where available)Administrative

RulemakingGovernorsCounty ExecutivesMayors

• Think about creating Progressive Biotechnology advocacy organs, calendar, public education opportunities

• Seek opportunities to present materials in professional education settings (CEU’s, etc.)

• Maximize existing relationship(s) to connect scholarship to a coordinated public policy agenda

• Deepen state action to advance a Federal consensus

• Think about our Think about our intellectual frame… intellectual frame…

• What does “WINNING” What does “WINNING” look like???look like???

• The ideas we are The ideas we are advocating are complex, advocating are complex, how do we put a more how do we put a more human face on our human face on our agenda?agenda?

• Look for low lying fruit, Look for low lying fruit, success creates successsuccess creates success

““It is not your obligation to It is not your obligation to complete the task, but neither complete the task, but neither are you at liberty to desist are you at liberty to desist from it entirely…”from it entirely…” - Pirket - Pirket Avot Avot