Bib: chap 28-31

Chapter Twenty-Eight: Gene Therapy and CRISPR

The first gene is found Woody Guthrie and Huntington’s Chorea

https://www.britannica.com/biography/Woody-Guthrie

http://news.mit.edu/1993/huntington-0331

https://www.genome.gov/25520322/online-education-kit-1983-first-disease-gene-mapped

Orphan Drug Report 2019 

https://info.evaluate.com/rs/607-YGS-364/images/EvaluatePharma%20Orphan%20Drug%20Report%202019.pdf?mkt_tok=eyJpIjoiWWpVMk1UVmtNRFpqT0dFeiIsInQiOiIrcmZ3QjNwamZWWVwvZ1ZkcU5XS2E3Rk5oNXA5MXZJVUVCRitMQXpQd0sxMGJPU0JhdGRWbVJQQkZrc0xZNDNPSXRNM09wMGh2OEFXNXFNN1wvb1plT

http://www.paradigmglobalevents.com/events/orphan-drugs-rare-diseases-2017-americas/

https://hbr.org/2017/04/the-cost-of-drugs-for-rare-diseases-is-threatening-the-u-s-health-care-system

Gene therapy Aug 2019

https://www.nejm.org/doi/full/10.1056/NEJMra1706910

Genetic blindness: Leber’s Congenital Amaurosis

https://www.nejm.org/doi/full/10.1056/NEJMoa1414221

http://www.cnn.com/2017/10/12/health/fda-gene-therapy-blindness-vote/index.html

 Cystic FibrosisThree drug treatment for cystic fibrosis  nejm  https://www.nejm.org/doi/full/10.1056/NEJMoa1908639

The Antidote by Barry Werth, Simon and Schuster, 2014 (see page 69–Victoria Sato, president of Vertex}

http://www.nejm.org/doi/full/10.1056/NEJMe1712335

https://www.nejm.org/doi/full/10.1056/NEJMoa1908639https://cysticfibrosisnewstoday.com/2020/08/24/vertex-triple-combo-kaftrio-approved-for-cf-patients-in-eu-with-f508del-mutation/

Europe approves triple therap.  August 2020 According to Vertex, as many as 10,000 people in Europe ages 12 years and older have CF characterized by one F508del mutation and one minimal function mutation, or a mutation in which the resulting CFTR protein works minimally. The newly approved triple combination is the first therapy that works on the underlying cause of CF to be approved for such individuals.ttps://cysticfibrosisnewstoday.com/2020/08/24/vertex-triple-combo-kaftrio-approved-for-cf-patients-in-eu-with-f508del-mutation/

Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL)

SMA spinal muscular atrophy and POMPE’S

https://smanewstoday.com/2015/02/23/exclusive-new-insight-into-sma-from-dr-adrian-krainer/

https://www.nejm.org/doi/full/10.1056/NEJMoa1706198

https://xconomy.com/national/2019/04/15/ho-an-ohio-kids-hospital-quietly-became-ground-zero-for-gene-therapy/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2692727/

https://www.jci.org/articles/view/1722

https://doi.org/10.1002/14651858.CD011539.pub2

Hemophilia

Nicholas and Alexandra by Raymond Massie. Random House; 1967

hemophila B  N Engl J Med  2015

https://www.nejm.org/doi/full/10.1056/NEJMoa1708538

Gene transfer in severe hemophilia A https://www.nejm.org/doi/full/10.1056/NEJMoa1708483

https://www.forbes.com/sites/matthewherper/2017/12/11/spark-shadows-biomarin-in-hemophilia-gene-therapy-race/#7af39d156106

http://www.ucl.ac.uk/news/news-articles/1217/131217-UCL-research-leads-to-haemophilia-therapy-success

As of 2016, BioMarin has six products on the market, each of which is an orphan drughttps://en.wikipedia.org/wiki.BioMarin_Pharmaceutical

Buy a gene cheap:  Addgene

https://www.addgene.org/

Amyloidosis 

https://www.sfgate.com/health/article/The-Domino-Effect-Woman-gets-new-liver-gives-3238583.php

CRISPR

A Crack in Creation by Jennifer Doudna

Emmanuelle Charpentier co-discoverer of CRISPR

Charpentier rna https://embryo.asu.edu/pages/jennifer-doudna-and-emmanuelle-charpentiers-experiment-about-crisprcas-9-systems-role-adaptive

https://www.nytimes.com/2016/05/31/health/emmanuelle-charpentiers-crispr-dna-gene-editing.html https://www.nature.com/news/the-quiet-revolutionary-how-the-co-discovery-of-crispr-explosively-changed-emmanuelle-charpentier-s-life-1.19814

Sometimes, I then go to sleep again for an hour. I don’t have time to have a social life or even a cultural life.e.

https://www.nature.com/news/the-quiet-revolutionary-how-the-co-discovery-of-crispr-explosively-changed-emmanuelle-charpentier-s-life-1.19814

https://embryo.asu.edu/pages/jennifer-doudna-and-emmanuelle-charpentiers-experiment-about-crisprcas-9-systems-role-adaptive

In the early 1980s, Mario Capecchi discovered that sections of DNA that had been inserted into the cell nuclei of mammals could be incorporated into the cell’s genome. 

https://www.nobelprize.org/prizes/medicine/2007/capecchi/facts/

Chapter Twenty-Nine: Gaming the System

Martin Shkreli and Daraprim

Gertrude Elion

daraprim https://theoncologist.onlinelibrary.wiley.com/doi/full/10.1634/theoncologist.11-9-961

https://www.washingtonpost.com/archive/lifestyle/wellness/1988/10/25/pathway-to-the-prize/12924d14-d134-455b-aa9f-d7a494ddeb86/

Acthar ny times https://www.nytimes.com/2012/12/30/business/questcor-finds-profit-for-acthar-drug-at-28000-a-vial.html

https://www.britannica.com/biography/Gertrude-B-Elion https://www.nap.edu/read/9977/chapter/3#18   

The Curious Case of Colchicine NEJM June 2010 https://www.nejm.org/doi/full/10.1056/NEJMp1003126

Acthar

60 minutes May 12, 2019

Chapter Thirty: Are Generic Drugs Safe and Effective?

https://www.bloomberg.com/news/articles/2017-01-17/where-the-u-s-actually-gets-its-drug-supply-quicktake-q-a

Katherine Eban: NY Times May 12, 2019.

Bottle of Lies by Katherine Eban: Harper Collins 2019

https://www.fda.gov/news-events/congressional-testimony/securing-us-drug-supply-chain-

International regulations

https://www.ema.europa.eu/en/human-regulatory/research-development/compliance/good-manufacturing-practice

https://www.fda.gov/international-programs/international-arrangements/mutual-recognition-agreement-mra

https://www.panmobil.com/single-post/In-2019-pharmaceuticals-are-only-available-with-2D-Barcodes

https://www.gs1.org/docs/healthcare/events/17-10-17/8-_achieving_single_unit_pharmaceutical_traceability_-_van_der_schors.pdf

https://www.pharmamanufacturing.com/industrynews/2018/india-regulators-to-re-inspect-147-drug-plants/

Oversight of the FDA foreign inspection program Dec 10, 2019

https://www.fda.gov/news-events/congressional-testimony/securing-us-drug-supply-chain-oversight-fdas-foreign-inspection-program-12102019

Chapter Thirty-One: The FDA—The Fox That’s Guarding the Henhouse

Fastrack approval

https://www.accessdata.fda.gov/scripts/fdatrack/view/track.cfm?program=cber&id=CBER-All-IND-and-IDEs-recieved-and-actions/

Forbidden Cures. By Steven Fredman MD; Robert E Burger Stein and Day, 1976

The Rosiglitazone Story — Lessons from an FDA Advisory Committee Meeting. https://www.nejm.org/doi/full/10.1056/NEJMp078167 

The Kefauver–Harris Amendments at 50

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4101807/

A Political History of Medicare and Prescription Drug Coverage

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2690175/

This article examines the history of efforts to add prescription drug coverage to the Medicare program.

https://www.nejm.org/doi/full/10.1056/NEJMhle1800125 https://ipandtech.hillwallackblog.com/wp-content/uploads/2017/12/BPCIA_DoYouWannaDance_RichardCatalinaJr_-NewJerseyLawyer_August-2017.pdf

https://www.patentdocs.org/followon_biologics/\

Overview of FDA’s Expanded Access Program for Investigational Drugs

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5443564/

https://www.ncbi.nlm.nih.gov/pubmed/27917324

Indian Patent act of 1970

https://www.lexology.com/library/detail.aspx?g=3f92413f-107c-4886-aca7-24633a341e22

https://www.business-standard.com/article/companies/40-years-ago-and-now-cipla-the-crusader-for-affordable-drugs-takes-the-patent-battle-to-mncs-114122400009_1.html

The Fate of FDA Postapproval Studies, by Steven Woloshin M.D. et al   N Engl J Med 2017; 377:1114-1117

FRANCES KELSEY AND THALIDOMIDE

https://www.fda.gov/media/89162/download

Kefauver

Crime in America, by Estes Kefauver; paper back 1951

Sulfa in ethylene glycol 

https://www.the-scientist.com/foundations/the-elixir-tragedy-1937-3

https://www.smithsonianmag.com/history/the-senator-and-the-gangsters-69770823/

Remdesivir 

https://www.nejm.org/doi/full/10.1056/NEJMoa2007764

https://www.reuters.com/article/us-health-coronavirus-india-gilead-scien/india-approves-gileads-remdesivir-to-treat-severe-covid-19-cases-idUSKBN2390VL