{"id":32422,"date":"2019-04-19T03:39:37","date_gmt":"2019-04-19T10:39:37","guid":{"rendered":"http:\/\/www.jewishindependent.ca\/?p=32422"},"modified":"2019-04-17T22:06:58","modified_gmt":"2019-04-18T05:06:58","slug":"trying-to-make-access-equal","status":"publish","type":"post","link":"https:\/\/www.jewishindependent.ca\/index.php\/2019\/04\/19\/trying-to-make-access-equal\/","title":{"rendered":"Trying to make access equal"},"content":{"rendered":"

Dr. Cheryl Rockman-Greenberg (photo from Rockman-Greenberg)<\/em><\/strong><\/span><\/p>\n

In the 1970s, when Dr. Cheryl Rockman-Greenberg was eyeing the budding field of genetics as a career, she had to become a pediatric doctor first. Now, Rockman-Greenberg counts her clinical background as a blessing, one that, today, geneticists no longer require.<\/p>\n

\u201cHaving a strong background in clinical medicine certainly always helped me in my career, because the kind of genetics I was always interested in was in rare metabolic diseases,\u201d said Rockman-Greenberg. \u201cThese are diseases often caused by enzyme deficiencies that go by very elaborate names. Having a good foundation in clinical medicine through pediatrics certainly helped me.\u201d<\/p>\n

Rockman-Greenberg, who lives in Winnipeg, was invited to speak at the city\u2019s Congregation Shaarey Zedek Sisterhood Interfaith Luncheon on April 30.<\/p>\n

\u201cI learned that the luncheon was spearheaded through the sisterhood in many ways to promote information sharing between the faiths,\u201d she said, noting that a purpose of the event is education and \u201cto look at how we can build bridges between people of different faiths and not build walls.\u201d<\/p>\n

\u201cFrom a global perspective,\u201d she said, \u201cI think it fits the themes of the interfaith luncheon. And, from a Jewish perspective, I\u2019ve certainly been involved over the years, particularly with the National Council of Jewish Women, of increasing awareness of the importance of genes for health, and bringing together some of the advocacy groups in rare genetic disorders.<\/p>\n

\u201cI helped the National Council put out a brochure on carrier testing on new genetic disorders in the Ashkenazi Jewish population that has been extremely well-received worldwide. This information is always evolving.\u201d<\/p>\n

At the luncheon, Rockman-Greenberg was planning to discuss, among other things, Bill S-201, also known as the Genetic Non-Discrimination Act, which passed into law in Canada in 2017, though it is still being challenged by insurance companies in Quebec.<\/p>\n

\u201cThis is a remarkable act in the sense that it does protect Canadians from the use of genetic test results outside of medical care and medical research,\u201d Rockman-Greenberg told the Independent<\/em>. \u201cIn other words, genetic test results do not have to be disclosed to insurance companies or employers. We\u2019re one of many countries who have such legislation in place, and many people here have worked for years and years lobbying for similar legislation for Canada.\u201d<\/p>\n

Methods of genetic testing continue to advance, said Rockman-Greenberg. Tests that were nonexistent or very complicated to administer as recently as two decades ago can now be done quickly and inexpensively.<\/p>\n

\u201cThe evolution has dramatically changed over the past 10 years, particularly in the sense that the techniques we use to diagnose genetic disease have dramatically changed \u2013 from studying one gene at a time, to being able to sequence the entire genome of an individual,\u201d she explained.<\/p>\n

When Rockman-Greenberg refers to \u201cnew genetics,\u201d she is referring to the ability to offer state-of-the-art, revolutionary genetic testing that was not possible just 10 years ago. It is this access that Rockman-Greenberg is lobbying for now.<\/p>\n

\u201cEverybody doesn\u2019t have the same access to the testing in Canada,\u201d she said. \u201cIt\u2019s certainly not uniform from province to province or within provinces. So, many people are very committed to ensuring there are strategies in place to promote fairness.<\/p>\n

\u201cNotwithstanding that, the legislation is going to protect people against disclosing information that is already in place. I think we are ahead of the game because we have this in place. But, we are not ahead of the game in making sure people are going to have access to new diagnostic testing and new therapeutics in a way that\u2019s going to be equal across the board.\u201d<\/p>\n

Rockman-Greenberg\u2019s focus on rare metabolic diseases means that she has witnessed firsthand the struggles to get specialty drugs approved through a system focused on the big diseases, such as diabetes and cancer.<\/p>\n

\u201cYou may get a new drug for diabetes that will be approved and available for patients very quickly, whereas some of the new drugs for other diseases I treat can take years and years before they go through the approval process,\u201d she said.<\/p>\n

Rockman-Greenberg thought that the topic was an appropriate one for an interfaith gathering, \u201cas everybody having the same chance to be successful is very important to me. I work with families and patient support groups to help remove barriers and help people feel empowered.\u201d<\/p>\n

She said, \u201cThere are many challenges in dealing with rare diseases and I try to work both sides: the patient side, as well as advocate for changes at the government level, to make sure there is fairness in access to new therapies.\u201d<\/p>\n

Rebeca Kuropatwa<\/strong> is a Winnipeg freelance writer.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Dr. Cheryl Rockman-Greenberg (photo from Rockman-Greenberg) In the 1970s, when Dr. Cheryl Rockman-Greenberg was eyeing the budding field of genetics as a career, she had to become a pediatric doctor first. Now, Rockman-Greenberg counts her clinical background as a blessing, one that, today, geneticists no longer require. \u201cHaving a strong background in clinical medicine certainly […]<\/p>\n","protected":false},"author":2,"featured_media":32423,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[4806,3672,4803,2864,1122,5260,2251,1667,8036,4048],"class_list":["post-32422","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-national","tag-cheryl-rockman-greenberg","tag-equality","tag-genetics","tag-health","tag-human-rights","tag-interfaith","tag-law","tag-ncjw","tag-shaarey-zedek","tag-winnipeg"],"blocksy_meta":{"styles_descriptor":{"styles":{"desktop":"","tablet":"","mobile":""},"google_fonts":[],"version":8}},"_links":{"self":[{"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/posts\/32422","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/comments?post=32422"}],"version-history":[{"count":0,"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/posts\/32422\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/media\/32423"}],"wp:attachment":[{"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/media?parent=32422"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/categories?post=32422"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.jewishindependent.ca\/index.php\/wp-json\/wp\/v2\/tags?post=32422"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}