BASIC Act

Mr. President, I rise today to introduce the ``Ending the Diagnostic Odyssey Act.'' This legislation gives States the option of providing whole genome sequencing (WGS) clinical services through edicaid for children with a disease that is suspected to have a genetic cause, at an enhanced Federal matching rate for three years. I am pleased to be joined by Senators Kelly and Menendez.

Children with rare diseases will spend on average five to seven years on a diagnostic odyssey, and 30 percent of

those children will not survive beyond the age of five years old. The average patient sees seven different physicians in that time. The wait to find a cause--never mind a cure--can be excruciating. Parents try to project a calm and reassuring presence for their child while facing a whirlwind of doctor appointments, hospital visits, and unanswered questions.

Undeniably, we are making progress in both accelerating research funding for rare diseases as well as in the development of diagnostics. In 2014, the National Institutes of Health (NIH) launched a program called the Undiagnosed Disease Network (UDN). In its first 20 months, the UDN accepted 601 participants undiagnosed by traditional medical practices. Of those who completed their UDN evaluation during this time, 35% were given a diagnosis. Many of these diagnoses were rare genetic diseases including 31 previously unknown syndromes.

In May 2019, the Director of the National Institutes of Health, Dr. Francis Collins, wrote a blog post on how whole genome sequencing-- combined with artificial intelligence (AI)--can now be used to diagnose genetic diseases in seriously ill babies in fewer than 24 hours. Dr. Collins writes ``I would submit that there is no other technology in the history of planet Earth that has experienced this degree of progress in speed and affordability.''

For parents of children with an undiagnosed illness, answers cannot come soon enough. There are approximately 7,000 rare diseases known today. Approximately 80 percent of rare diseases are genetic, and about one-half of all rare diseases affect children. For example, Alstrom syndrome is an extremely rare and complex genetic disorder. Approximately 1200 affected individuals have been identified worldwide, which makes a obtaining a correct diagnosis challenging. Characteristics of Alstrom syndrome include vision disturbances, sensorineural hearing impairment, cardiomyopathy, obesity, kidney dysfunction, and diabetes. Robin Marshall, Executive Director of the Alstrom Syndrome International, located in Mount Desert Island, Maine, has said that ``Whole Genome Sequencing has changed the lives of those we represent by enabling earlier and more accurate diagnosis, fostering more timely and appropriate medical care, and unlocking a host of social services to combat the educational and psycho-social complications that our children confront.''

By giving states an incentive to provide whole genome sequencing for eligible children through Medicaid, my legislation will ensure that more children and their families can obtain the right diagnosis and treatment from the start. The ``Ending the Diagnostic Odyssey Act'' has the support of more than one hundred patient advocacy organizations, including Alstrom Syndrome International, the Genetic Alliance, the Personalized Medicine Coalition, and many others. I urge my colleagues to support this legislation.

Mr. President. the Public Company Accounting Oversight Board (PCAOB) Enforcement Transparency Act, which I reintroduce today with Senator Grassley, will bring needed transparency to the disciplinary proceedings the PCAOB has brought against auditors and audit firms earlier in the process.

Nearly two decades ago, in response to a series of massive financial reporting frauds, including those involving Enron and WorldCom. the Senate Banking Committee held multiple hearings, which produced consensus on various underlying causes, including weak corporate governance, a lack of accountability, and inadequate oversight of accountants charged with auditing public companies' financial statements. Later, in a 99 to 0 vote, the Senate passed the Sarbanes- Oxley Act of 2002 to address the structural weaknesses revealed by the hearings. Among its many provisions, this law called for the creation of an independent board, the PCAOB, responsible for overseeing auditors of public companies in order to protect investors who rely on independent audit reports on the financial statements of public companies.

Today, the PCAOB, under the oversight of the U.S. Securities and Exchange Commission (SEC), oversees more than 1,700 registered accounting firms, as well as the audit partners and staff who contribute to a firm's work on each audit. The Board's ability to begin proceedings that can determine whether there have been violations of its auditing standards or rules of professional practice is a crucial component of its oversight. However, unlike other oversight bodies, the Board's disciplinary proceedings cannot be made public without consent from the parties involved. Of course, parties subject to disciplinary proceedings have no incentive to consent to publicizing their alleged wrongdoing and these proceedings typically remain cloaked behind a veil of secrecy. In addition, the Board cannot publicize the results of its disciplinary proceedings until after the appeals process has been completely exhausted, which can often take several years.

This lack of transparency invites abuse and undermines the Congressional intent behind the PCAOB, which was to shine a bright light on auditing firms and practices, deter misconduct and bolster the accountability of auditors of public companies to the investing public.

Our bill will restore transparency by making hearings by the PCAOB, and all related notices, orders, and motions, transparent and available to the public unless otherwise ordered by the Board. This would more closely align the PCAOB's procedures with those of the SEC for analogous matters.

Increasing transparency and accountability of audit firms subject to PCAOB disciplinary proceedings bolsters investor confidence in our financial markets and better protects companies from problematic auditors. I hope our colleagues will join Senator Grassley and me in supporting this legislation to enhance transparency in the PCAOB's enforcement process.

Mrs. President, I rise to speak in support of the ``BASIC Act,'' which I introduced today.

I know how important it is to help students cover the full cost of attending college, including tuition and fees, housing, food, transportation, books, medical, childcare and supplies.

In California, even though State and institutional aid programs cover full tuition and fees for about half of students attending a California State University, University of California and California Community College, students struggle to pay for the remaining cost of attendance.

Each year, over 300,000 eligible applicants do not receive a state Cal Grant because of limited availability. Non-tuition college costs can exceed $20K annually. Low-income students may spend about half their family income on out-of-pocket costs after grant aid. This bill will help accelerate California's work to make college affordable and provide funding to reach more schools across California and across our Nation. This is especially important at a time when community college enrollment has slowed during the COVID-19 pandemic, particularly among students of color, lower-income students, and students who have left to work or take care of family members.

As we work to build back better and increase affordability and accessibility

of higher education, we must help our students stay in school.

That is why I am proud to introduce this bill to authorize $1 billion for a new grant program to help institutions of higher education meet students' basic needs.

This funding represents an essential aspect of building more equitable paths to higher education, and it represents an investment in our students, our institutions, and our future.

This legislation recognizes the disproportionate impact this pandemic has on vulnerable populations and it helps coordinate assistance across federal agency lines.

I want to thank Senator Warren and Representative Torres for introducing this bill with me, and I hope our colleagues will join us in support of this bill that ensures no student is forced to choose between their education and food or housing.

Thank you, Mr. President. I yield the floor.

Mr. President, I ask unanimous consent that the text of the bill be printed in the Record.