{"id":96,"date":"2019-07-27T05:18:48","date_gmt":"2019-07-27T12:18:48","guid":{"rendered":"https:\/\/awplife.com\/demo\/newsstreet\/?p=96"},"modified":"2019-07-31T09:10:42","modified_gmt":"2019-07-31T16:10:42","slug":"with-2-1-million-price-tag-families-fight-to-get-the-lifesaving-drug-for-babies-covered","status":"publish","type":"post","link":"https:\/\/awplife.com\/demo\/newsstreet\/with-2-1-million-price-tag-families-fight-to-get-the-lifesaving-drug-for-babies-covered\/","title":{"rendered":"With $2.1 million price tag, families fight to get the lifesaving drug for babies covered"},"content":{"rendered":"\n

When the Food and Drug Administration approved Zolgensma<\/a>, a lifesaving medication to treat spinal muscular atrophy, parents of young children with the rare and fatal disease rejoiced.<\/p>\n\n\n\n

But that relief was quickly tempered by the price tag: $2.1 million \u2014 the most expensive ever for a single dose of a drug.<\/p>\n\n\n\n

\u201cI was pretty shocked,\u201d Sarah Stanger of Monroe, Ohio, said. \u201cYou know, as a teacher, we definitely don\u2019t have $2.1 million, and I don\u2019t know anybody who does.\u201d<\/p>\n\n\n\n

Stanger\u2019s son, Duke, was diagnosed with the condition as an infant. When Zolgensma was approved in May, doctors said that the medicine was the best option for Duke. But the family’s insurance company refused to pay for it.<\/p>\n\n\n\n

Without the drug, Duke\u2019s future is bleak. In babies with SMA, nerve cells in the brain stem and spinal cord that control the muscles needed for speaking, walking, breathing and swallowing are destroyed because a critical protein is missing. As the disease progresses, muscles weaken and atrophy and patients lose their ability to walk, eat or even breathe, according to the\u00a0National Institute of Neurological Disorders and Stroke<\/a>.<\/p>\n\n\n\n

\u201cOnce those neurons die, there\u2019s no reviving them,\u201d Stanger told NBC News. \u201cWith no treatment, most children will pass away by age 2.\u201d<\/p>\n\n\n\n

When the drug was approved, Novartis, the maker of Zolgensma, said that it expected insurance companies would cover the cost of the treatment. Novartis also said that the high cost of the drug was justified, and the one-time treatment was half the cost of 10 years of treatment with an existing SMA drug.<\/p>\n\n\n\n

But Butler Health Plan, the Stangers\u2019 health insurance provider, said that their reasoning for refusing to pay for Zolgensma is that this type of therapy has historically been excluded from coverage. Zolgensma is a type of gene therapy<\/a>.<\/p>\n\n\n\n

\u201cTo date, gene therapy \u2026 has been excluded from the benefits provided under our health benefit plans,\u201d Stephanie Hearn, executive director at Butler Health Plan, said in an email. That\u2019s because, despite gene therapy\u2019s potential to treat or cure debilitating diseases, the therapies are costly, and health insurance providers still need to figure out how to balance out the cost of these expensive treatments<\/a> without jeopardizing coverage for the rest of the people on the plan, Hearn wrote.<\/p>\n\n\n\n

But that math is going to become increasingly difficult to resolve as time goes on, according to David Mitchell, founder of the advocacy group Patients for Affordable Drugs.<\/p>\n\n\n\n

“The situation we’re seeing right now with access to Zolgensma is a problem that will only get worse,\u201d Mitchell said. There are at least 400 other gene therapies in development, and \u201cif they all come to market with prices of $2 million, we won\u2019t be able to afford them as families or as a nation,\u201d he said.<\/p>\n\n\n\n

Novartis told NBC News that a \u201cwide range of patients\u201d have had the drug covered by insurance since its approval, but noted that it\u2019s not uncommon for patients to have to go through an appeals process for any new drug.<\/p>\n\n\n\n

There may be some hope, however.<\/p>\n\n\n\n

Just a few days ago, a major insurance company, UnitedHealthcare, reversed its decision to deny payment for Zolgensma to two children whose cases had received publicity. The company told NBC News that the reversals took place because they had received more information about the cases, not because of media attention.<\/p>\n\n\n\n

Ultimately, these cases are yet another example of how the health care system in the United States is failing patients, said Dr. Albert Wu, an internist, and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health.<\/p>\n\n\n\n

\u201cIt\u2019s an unfortunate reflection of how our health care system is currently working \u2014 or not working \u2014 that the only way people can get drugs paid for is through a Hail Mary GoFundMe site or by generating enough bad press that the payer feels it isn\u2019t worthwhile to resist,\u201d Wu said.<\/p>\n","protected":false},"excerpt":{"rendered":"

When the Food and Drug Administration approved Zolgensma, a lifesaving medication to treat spinal muscular atrophy, parents of young children with the rare and fatal disease rejoiced. But that relief was quickly tempered by the price tag: $2.1 million \u2014 the most expensive ever for a single dose of a drug. \u201cI was pretty shocked,\u201d Sarah […]<\/p>\n","protected":false},"author":1,"featured_media":99,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[68,24,31],"tags":[69,70],"class_list":["post-96","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health","category-news","category-world","tag-drug","tag-sarah-stanger"],"_links":{"self":[{"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/posts\/96","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/comments?post=96"}],"version-history":[{"count":3,"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/posts\/96\/revisions"}],"predecessor-version":[{"id":100,"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/posts\/96\/revisions\/100"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/media\/99"}],"wp:attachment":[{"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/media?parent=96"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/categories?post=96"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/awplife.com\/demo\/newsstreet\/wp-json\/wp\/v2\/tags?post=96"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}